Nothing interesting today. But in a good way. Nurse Deborah said that Sara laughed (as much as she can) at her today. I forget for what reason though. She also spent a coupple hours in the cardiac chair. I got lots of smiles today. That is always encouraging.
Since I finished The Hobbit, I asked if she wanted me to read another book to her. She indicated yes. Thankfully, she does not want me to read her Lord of the Rings. Since I have the whole LotR in one book, its a daunting task. I eventually figured out that she wants me to read a book off of her shelf. She also indicated that she had a specfic book in mind. Unfortunatly, since I can't work with the letter board, I have no way of knowing which one. I'll have to either bring a list of all her books and go through them, or Have somebody else ask her to spell the title of the book using the letter board. (Every time I've tried to use the letter board, I've failed miserably. She indicated I should give up for now.)
The skin on her feet is still dry and cracking in places, So i rubed in some lotion and gave her a foot rub in the process. Fortunatly her hands didn't look bad today, so I left them alone. She did however have a buildup of adhesive from the varous sensors on her body being moved around. So Deborah and I got adhesive removal wipes, wash cloths and warm water and got rid of as much of that stuff as we could. Her skin was nice an clean afterwards. I always feel better knowing that she's comfortable in her own skin. And I know Sara appreciates it too.
On a clinical note, I noticed that Sara is back down to a normal percentage of oxygen on her ventalator.
~Daniel H.
Monday, December 31, 2007
Sunday, December 30, 2007
Saturday movie and presents
I will leave the medical jargon to Kristina. Hospitals and I don’t like each other. The only way to get me into one is to visit my kid. So Kristina thanks for staying on top of all the medical stuff. When I go there, I tend to concentrate on Sara knowing you know more than I do, and have a better handle on things. Working retail during the holidays is brutal, but knowing you are all over the these issues helps a lot.
Sara had a little bit of a rough day today. There was lots of coughing and suctioning. She gets such a pained look on her face when does. I showed up with a few goodies for her today. I brought a bunch of movies from my place for her to watch. If you have a laptop, you can watch a movie with her. How we worked it today was, I showed her the DVD boxes and she blinked for the one she wanted to see. Today we watched a Series of unfortunate events. I left the rest of the movies in her room. She also got pictures of me and Grandpa Don. Those got hung on the wall with all of the others. Then she got season 6 and 7 of ER (her Christmas presents).
One of the things I noticed today was that Sara really has a good grip in both her hands now. More strength than she has shown in the past. I made sure she knew I was proud of her and gave her lots of encouragement. She spent a lot of time in the Cardiac chair and she tolerated it well. When this evening rolled around, the nurses put her in the chair again. She was sitting pretty up right. I noticed after a while that Sara had a pained look on her face. So we went through the motions of locating the pain. We narrowed it down to her feeding tube. When I had the nurse move her back into a more reclined position, Sara indicated the pain had stopped. It wasn’t long before I was dismissed from the room so that she could get a bath and have her traic cleaned. When I was finally let back in the room it was late. I asked Sara if she would go to sleep and she said yes. But she wouldn’t. LOL when she has company she wants to stay up and interact. So I told her to close her eyes and I was heading out.
She seems to be getting stronger all the time. When she coughs, it is amazing to see all the muscles she puts into play. Her leg will tighten up; she opens her mouth, tightens her abdominal muscles, and tries to sit upright. She just floors me at how far she has already come. And it’s nice when I can see her actually close her fingers around my hand.
Sara will have a Daniel up there tomorrow, and I will see her again next week.
Sara had a little bit of a rough day today. There was lots of coughing and suctioning. She gets such a pained look on her face when does. I showed up with a few goodies for her today. I brought a bunch of movies from my place for her to watch. If you have a laptop, you can watch a movie with her. How we worked it today was, I showed her the DVD boxes and she blinked for the one she wanted to see. Today we watched a Series of unfortunate events. I left the rest of the movies in her room. She also got pictures of me and Grandpa Don. Those got hung on the wall with all of the others. Then she got season 6 and 7 of ER (her Christmas presents).
One of the things I noticed today was that Sara really has a good grip in both her hands now. More strength than she has shown in the past. I made sure she knew I was proud of her and gave her lots of encouragement. She spent a lot of time in the Cardiac chair and she tolerated it well. When this evening rolled around, the nurses put her in the chair again. She was sitting pretty up right. I noticed after a while that Sara had a pained look on her face. So we went through the motions of locating the pain. We narrowed it down to her feeding tube. When I had the nurse move her back into a more reclined position, Sara indicated the pain had stopped. It wasn’t long before I was dismissed from the room so that she could get a bath and have her traic cleaned. When I was finally let back in the room it was late. I asked Sara if she would go to sleep and she said yes. But she wouldn’t. LOL when she has company she wants to stay up and interact. So I told her to close her eyes and I was heading out.
She seems to be getting stronger all the time. When she coughs, it is amazing to see all the muscles she puts into play. Her leg will tighten up; she opens her mouth, tightens her abdominal muscles, and tries to sit upright. She just floors me at how far she has already come. And it’s nice when I can see her actually close her fingers around my hand.
Sara will have a Daniel up there tomorrow, and I will see her again next week.
Friday, December 28, 2007
"Help me wake up"
Sara has been working with the physical therapist, myself and today with her father spelling things out on the letter board. I brought in a new board with better contrast and she was spelling things out so much quicker today. Well, she keeps spelling out the same things.
"Help me wake up."
Tracy called me, concerned that maybe she doesn't understand what is really happening to her, or the gravity of her situation. I assured him that she had expressed this before, and I was sure she understood, but would query her again at length.
So, at the hospital, I started talking with her about it. I asked her if she knew she was awake. Yes. I asked her if she understood that she was quadraplegic. Yes. I asked her if she expected to wake up from this. She said Yes. I told her that this was reality. I asked her if she understood that. Yes. I asked her if she liked that being the reality. No. Did you have a stroke? Yes. Do you understand that stroke damaged your brain? Yes. Do you know that the area damaged allows you to talk to your limbs and move? Yes. Do you think you are going to walk out of the hospital. Yes. No, Sweetie, the reality is that you are not. Do you understand that? Yes. Do you understand that this is the way you are right now? Yes. Do you understand that you are doing things that they said you'd never be able to do? Yes. Do you understand that we don't know how much you'll be able to do? Yes. Do you want us to help you? Yes. Do you want us to keep looking for ways to help you? Yes. Do you want us to stop? No. Do you want us to recuscitate you? Yes. So you want us to help keep you alive? Yes. To keep fighting? Yes. Ok...well, we will fight as long as you fight. We'll keep looking for ways to help you. But you have to understand that medicine says this is it...there's nothing magical and miraculous out there. Do you understand that? Yes. Are you ok with that? Yes. Ok. then we are too.
Her grandmother was there and watched this whole interchange. I may have a few questions reworded, but this was basically the conversation. She still seems to understand the gravity of her situation. She understands that she is there, and awake, but still keeps spelling "help me wake up." I think it speaks to her mental state, specifically her focus. She seems to be taking the approach that parts of her brain and body are asleep, or offline, and she has to wake them up, and we have to help her wake them up. Unfortunately, it is a bit concerning when she spells this out and you wonder if she thinks its a big dream (or nightmare, as it were...)
I discussed this also with her physical therapist, as Sara spelled this out to Rachel also - twice. The second time she got clever with us and spelled "I need to be woke" instead of "help me wake up." Then when we realized she had basically said the same thing, she grinned at Rachel and I, as if pulling one over on us. I got a little ticked off with her and told her that she shouldn't waste her therapy time toying with us. I told Rachel that I am going to start asking her questions that will force her to spell out answers and check comprehension, cognition and memory at the same time. I'll write down the questions and answers in our therapy log in the room. And, if it seems like she is having an issue with reality or coping with her disability, then we will request a psychiatric consult for her. Rachel noted that despite her spelling the same things out, she is doing so with the new board so much faster and we may have our new system worked out.
On the infection front...we are just waiting and seeing if she spikes any fever before discussing antibiotics. They changed out her foley catheter today, as it was kind of nasty. They continue to change dressings on her traech daily, inner canula daily, dressings on her PICC weekly, and dressings on her PEG daily.
Due to the real risk of infection, and her growing different things in cultures, please PLEASE if you visit her - wash hands, use the alcohol sanitizer before touching her at all, do not kiss her or put your face too close to hers. If you have been exposed to anyone who is sick, or may be, please do not visit until we're sure she's ok.
Doctor-Pulmonology came and talked to me at length about the vent, her lungs, etc. He also talked about maybe recommending that Sara be transferred to the ICU at Kaiser Santa Rosa. She still needs acute care treatment for her respiratory issues, and they have those services at the Kaiser here. So, after the first of the year, we may be exploring another option. As long as her level of care is comparable to where she is, and therapy options are there and comparable, then it is certainly something that would be great. I'll keep you posted.
"Help me wake up."
Tracy called me, concerned that maybe she doesn't understand what is really happening to her, or the gravity of her situation. I assured him that she had expressed this before, and I was sure she understood, but would query her again at length.
So, at the hospital, I started talking with her about it. I asked her if she knew she was awake. Yes. I asked her if she understood that she was quadraplegic. Yes. I asked her if she expected to wake up from this. She said Yes. I told her that this was reality. I asked her if she understood that. Yes. I asked her if she liked that being the reality. No. Did you have a stroke? Yes. Do you understand that stroke damaged your brain? Yes. Do you know that the area damaged allows you to talk to your limbs and move? Yes. Do you think you are going to walk out of the hospital. Yes. No, Sweetie, the reality is that you are not. Do you understand that? Yes. Do you understand that this is the way you are right now? Yes. Do you understand that you are doing things that they said you'd never be able to do? Yes. Do you understand that we don't know how much you'll be able to do? Yes. Do you want us to help you? Yes. Do you want us to keep looking for ways to help you? Yes. Do you want us to stop? No. Do you want us to recuscitate you? Yes. So you want us to help keep you alive? Yes. To keep fighting? Yes. Ok...well, we will fight as long as you fight. We'll keep looking for ways to help you. But you have to understand that medicine says this is it...there's nothing magical and miraculous out there. Do you understand that? Yes. Are you ok with that? Yes. Ok. then we are too.
Her grandmother was there and watched this whole interchange. I may have a few questions reworded, but this was basically the conversation. She still seems to understand the gravity of her situation. She understands that she is there, and awake, but still keeps spelling "help me wake up." I think it speaks to her mental state, specifically her focus. She seems to be taking the approach that parts of her brain and body are asleep, or offline, and she has to wake them up, and we have to help her wake them up. Unfortunately, it is a bit concerning when she spells this out and you wonder if she thinks its a big dream (or nightmare, as it were...)
I discussed this also with her physical therapist, as Sara spelled this out to Rachel also - twice. The second time she got clever with us and spelled "I need to be woke" instead of "help me wake up." Then when we realized she had basically said the same thing, she grinned at Rachel and I, as if pulling one over on us. I got a little ticked off with her and told her that she shouldn't waste her therapy time toying with us. I told Rachel that I am going to start asking her questions that will force her to spell out answers and check comprehension, cognition and memory at the same time. I'll write down the questions and answers in our therapy log in the room. And, if it seems like she is having an issue with reality or coping with her disability, then we will request a psychiatric consult for her. Rachel noted that despite her spelling the same things out, she is doing so with the new board so much faster and we may have our new system worked out.
On the infection front...we are just waiting and seeing if she spikes any fever before discussing antibiotics. They changed out her foley catheter today, as it was kind of nasty. They continue to change dressings on her traech daily, inner canula daily, dressings on her PICC weekly, and dressings on her PEG daily.
Due to the real risk of infection, and her growing different things in cultures, please PLEASE if you visit her - wash hands, use the alcohol sanitizer before touching her at all, do not kiss her or put your face too close to hers. If you have been exposed to anyone who is sick, or may be, please do not visit until we're sure she's ok.
Doctor-Pulmonology came and talked to me at length about the vent, her lungs, etc. He also talked about maybe recommending that Sara be transferred to the ICU at Kaiser Santa Rosa. She still needs acute care treatment for her respiratory issues, and they have those services at the Kaiser here. So, after the first of the year, we may be exploring another option. As long as her level of care is comparable to where she is, and therapy options are there and comparable, then it is certainly something that would be great. I'll keep you posted.
Thursday, December 27, 2007
A new round of concerns
Sara is doing ok today. Cute as hell, as always.
We are starting to see some things that are concerning her doctors - specific to infection. Those little fevers she's been getting have not really been a problem, but we've been kind of chasing our tails with them and her respiratory issues. I was finally able to nail a doctor down to an explanation of what they are seeing and how it is concerning.
Basically, when she gets a fever they immediately worry about infection. They take cultures of everything and see what grows. Everything being blood, urine and sputum (lung junk.) Sometimes she grows something in the culture, other times not. When she grows something they give her antibiotics and that's that. Kaiser is VERY good (reknowned, in fact) for their prududent use of antibiotics against specific pathogens, instead of using a broad-based antibiotic to wipe out anything and everything. They have a much lower incidence of antibiotic resistance than most hospitals/medical plans.
So, Sara grew stuff in all three cultures this time. They think what she grew in her blood culture may be from contamination of the sample, so they are going to re-do it - (Gram positive). What she grew from urine may be a urinary tract infection starting - (eColi). But what she grew in her lungs is the most concerning -(Acinetobacter). Basically, with bacteria there are two types - colonizers and invasive. Colonizer bacteria are bacteria that move in due to someone's condition and just hang around as a result. They don't do a lot of damage - they are just there. Invasive bacteria move in and wreak havoc. Because she is both on a chronic vent and has three indwelling catheters (peg tube (feeding), foley (urine) and a PICC line (central catheter IV) the risk of any type of infection is real and everpresent. The doctors have to make sure not to over treat or under treat.
So, they look to see if her white blood count has gone up, if she has a fever, or if her appearance and status are declining. Over the last two days, she's had all three (WBC ^ and fever up and down, and having to go on a ventilator rate).
I don't yet know what the plan of attack is on this, but we're all watching it closely. I'll keep you posted...
We are starting to see some things that are concerning her doctors - specific to infection. Those little fevers she's been getting have not really been a problem, but we've been kind of chasing our tails with them and her respiratory issues. I was finally able to nail a doctor down to an explanation of what they are seeing and how it is concerning.
Basically, when she gets a fever they immediately worry about infection. They take cultures of everything and see what grows. Everything being blood, urine and sputum (lung junk.) Sometimes she grows something in the culture, other times not. When she grows something they give her antibiotics and that's that. Kaiser is VERY good (reknowned, in fact) for their prududent use of antibiotics against specific pathogens, instead of using a broad-based antibiotic to wipe out anything and everything. They have a much lower incidence of antibiotic resistance than most hospitals/medical plans.
So, Sara grew stuff in all three cultures this time. They think what she grew in her blood culture may be from contamination of the sample, so they are going to re-do it - (Gram positive). What she grew from urine may be a urinary tract infection starting - (eColi). But what she grew in her lungs is the most concerning -(Acinetobacter). Basically, with bacteria there are two types - colonizers and invasive. Colonizer bacteria are bacteria that move in due to someone's condition and just hang around as a result. They don't do a lot of damage - they are just there. Invasive bacteria move in and wreak havoc. Because she is both on a chronic vent and has three indwelling catheters (peg tube (feeding), foley (urine) and a PICC line (central catheter IV) the risk of any type of infection is real and everpresent. The doctors have to make sure not to over treat or under treat.
So, they look to see if her white blood count has gone up, if she has a fever, or if her appearance and status are declining. Over the last two days, she's had all three (WBC ^ and fever up and down, and having to go on a ventilator rate).
I don't yet know what the plan of attack is on this, but we're all watching it closely. I'll keep you posted...
What the heck...
Sara is fine. She's had a trying 24 hours and is tired.
Lastnight they decided that she was having too much trouble breathing, so they went ahead and took her off of pressure support and are breathing for her. The ventilator is doing all the work, and they've upped the oxygen level they are giving her.
This morning they took a chest xray and it looked fairly clear. But, for some reason, one of the doctors decided to come in and bronchoscope her to look inside of her lungs. Apparently they were fairly clear, but I will find out why they did the procedure without my consent. It was not an emergency, as communicated to me by the nursing staff. Either way, it scared the hell out of Sara, who also was not talked to about it. If they think I pitched a bitch about letting her sit dirty for an hour and a half...hmm...not even a warm up for this...
She and I had a good evening...nice and quiet. I massaged her legs, worked her joints, and brushed her teeth. Then I crawled up in bed with her and we watched TV together. Makes some of the tougher parts of the last few days kinda melt away...just me and my girl...her safe in my arms...
I think I want to call and check on her again...
Lastnight they decided that she was having too much trouble breathing, so they went ahead and took her off of pressure support and are breathing for her. The ventilator is doing all the work, and they've upped the oxygen level they are giving her.
This morning they took a chest xray and it looked fairly clear. But, for some reason, one of the doctors decided to come in and bronchoscope her to look inside of her lungs. Apparently they were fairly clear, but I will find out why they did the procedure without my consent. It was not an emergency, as communicated to me by the nursing staff. Either way, it scared the hell out of Sara, who also was not talked to about it. If they think I pitched a bitch about letting her sit dirty for an hour and a half...hmm...not even a warm up for this...
She and I had a good evening...nice and quiet. I massaged her legs, worked her joints, and brushed her teeth. Then I crawled up in bed with her and we watched TV together. Makes some of the tougher parts of the last few days kinda melt away...just me and my girl...her safe in my arms...
I think I want to call and check on her again...
Wednesday, December 26, 2007
Christmas with Sara
This is a time of year where families gather and celebrate life and hope. We know the "real" reason for the season - but the continued celebration has more to do with family and sharing. We have a few Christmas traditions that the kids and I really enjoy.
In addition to celebrating Christmas, we honor our Jewish ancestors by lighting the menorah and singing the hannukah prayers. We decorate the house with ornaments accumulated from 4 generations and tell any stories we remember about them. We bake swedish breads and german cookies. I cook an awesome brisket and potato latkas for Christmas Eve dinner, and a ham for Christmas day. Every year I buy the family some "family present". One year it was a digital camera, then next year was a butter dish, and last year it was a gravy boat.
We try and stay lighthearted about the holidays - placing no real importance on presents, but enjoying them anyhow. My kids look forward more to the stockings. I have been known to find the most obscure and silly things to put in a stocking. Popcorn on the cob, for example. Put the whole thing in the microwave and watch it fill up the appliance. Or dumping a barrel of monkeys into the stocking, to become tangled with the mountain of chocolate that is always present.
This year was a lot harder. We tried to keep to some of our familiar and comforting traditions, but it was not easy.
Sara did not want to have the menorah lighted or the hannukah prayers. There was no family present. The only decorations were on a small live tree that Michael wanted. But, the stockings were filled with the silly and sweet.
We almost didn't have any presents this year, but I sold off something on Christmas Eve. Then I went shopping for the lighthearted and whimsical. I found myself also trying to be practical for Sara. (what DO you get for someone who is quadraplegic?) Then I remembered, lighthearted and whimsical would work just fine for her, too.
A clapper for Grandma, chili pepper lights for Michael, and a chia cat for Sara. A jar of pickles for Grandma, a clapper for Michael, and a dragon kite for Sara (her chinese zodiac is the dragon). Crosswords for Grandma, Make magazine for Michael, and 1000 Places to See Before You Die for Sara. (she wants to travel...now I can read about these places to go).
While I went to the hospital to do Christmas Eve with Daniel and Sara, Michael and Grandma Sandy had christmas here together. They had a blast together and Michael got to have a one-on-one Christmas and tons of silliness. (the two of them are about a pair of 8 year olds if I've seen anyone...)
Christmas Eve with Daniel and Sara was a bit more somber, sad. Its hard to be happy, chirpy and such when all you want is for this person to be out of bed, tearing open presents, giggling like she does. The pain of just how unfair this is, and of what she is being robbed of, came palpably to the surface - I could taste it. But, still, trying to make it something special for the two of them, you swallow it and start singing christmas carols you can't remember the words to, and hang more decorations. She seemed to enjoy it well enough, given the circumstances.
She's still a kid, even at 19, and loves to be silly. Gets so happy at christmas. Is always up for silliness and whimsey. I hate that I can't fix all this...
Christmas was for the rest of the family. Grandma Sandy, Michael, and I went up to see her. And, we brought an extra special surprise for her - Dusty.
When I asked Sara what she wanted for Christmas a few days ago, she spelled out H O M E. Broke my heart. So I brought her the one thing from home she'd most want to see...her cat.
When we arrived she broke into the biggest smile when she saw her brother. I have never seen Sara so happy to see her brother. It was obvious that them being together today meant a lot to them both. Seeing that made my day. I have always cherished when my children visibly enjoyed being together. That is a special bond. But she was so happy to see him, and followed every movement of his.
After Michael opening her presents for her, and acting the absolute fool with them (and a little Vanna White...) she got a bit tired. She was fighting taking a nap, but it was obvious she was wiped out. So, I went to the car to get her cat.
I ran the de-shedding comb over him in the parking lot. Good thing the wind was blowing, because the pile of fur I was getting off of him was enough to cover another cat...
When I brought him into her room the smile started and she never really did take her eyes off of him. I helped her stroke him, and he just sat and purred. When her ventilator went to alarm later on, he was jumping off the bed bolting for the cat carrier. I ended up putting the carrier on the bed, and her arm inside it. Then the cat nestled down on top of her arm and went back to purring. He had his girl. She had her cat. Grandma Sande, Michael and I just sat off to the side and let her have the fur therapy and peacefulness only her cat could give her.
At the end of the day, she was happy and content. Although it was by no means an easy Christmas, I think the family came through it ok. I think we were able to keep as much of our spirit and traditions in it as possible, within the limitations of environment and current condition of Sara, and still manage to give Michael a fairly special time just for him.
I am exhausted, mentally, emotionally and physically. My Santa (Don) was so sweet about our lack of time together today. He is very understanding, but I don't like that he has to be right now. He just really helped keep me moving and trying to make this the best christmas season I could for my family.
In the end, we still did celebrate life and hope. And you can't get much better than that...
In addition to celebrating Christmas, we honor our Jewish ancestors by lighting the menorah and singing the hannukah prayers. We decorate the house with ornaments accumulated from 4 generations and tell any stories we remember about them. We bake swedish breads and german cookies. I cook an awesome brisket and potato latkas for Christmas Eve dinner, and a ham for Christmas day. Every year I buy the family some "family present". One year it was a digital camera, then next year was a butter dish, and last year it was a gravy boat.
We try and stay lighthearted about the holidays - placing no real importance on presents, but enjoying them anyhow. My kids look forward more to the stockings. I have been known to find the most obscure and silly things to put in a stocking. Popcorn on the cob, for example. Put the whole thing in the microwave and watch it fill up the appliance. Or dumping a barrel of monkeys into the stocking, to become tangled with the mountain of chocolate that is always present.
This year was a lot harder. We tried to keep to some of our familiar and comforting traditions, but it was not easy.
Sara did not want to have the menorah lighted or the hannukah prayers. There was no family present. The only decorations were on a small live tree that Michael wanted. But, the stockings were filled with the silly and sweet.
We almost didn't have any presents this year, but I sold off something on Christmas Eve. Then I went shopping for the lighthearted and whimsical. I found myself also trying to be practical for Sara. (what DO you get for someone who is quadraplegic?) Then I remembered, lighthearted and whimsical would work just fine for her, too.
A clapper for Grandma, chili pepper lights for Michael, and a chia cat for Sara. A jar of pickles for Grandma, a clapper for Michael, and a dragon kite for Sara (her chinese zodiac is the dragon). Crosswords for Grandma, Make magazine for Michael, and 1000 Places to See Before You Die for Sara. (she wants to travel...now I can read about these places to go).
While I went to the hospital to do Christmas Eve with Daniel and Sara, Michael and Grandma Sandy had christmas here together. They had a blast together and Michael got to have a one-on-one Christmas and tons of silliness. (the two of them are about a pair of 8 year olds if I've seen anyone...)
Christmas Eve with Daniel and Sara was a bit more somber, sad. Its hard to be happy, chirpy and such when all you want is for this person to be out of bed, tearing open presents, giggling like she does. The pain of just how unfair this is, and of what she is being robbed of, came palpably to the surface - I could taste it. But, still, trying to make it something special for the two of them, you swallow it and start singing christmas carols you can't remember the words to, and hang more decorations. She seemed to enjoy it well enough, given the circumstances.
She's still a kid, even at 19, and loves to be silly. Gets so happy at christmas. Is always up for silliness and whimsey. I hate that I can't fix all this...
Christmas was for the rest of the family. Grandma Sandy, Michael, and I went up to see her. And, we brought an extra special surprise for her - Dusty.
When I asked Sara what she wanted for Christmas a few days ago, she spelled out H O M E. Broke my heart. So I brought her the one thing from home she'd most want to see...her cat.
When we arrived she broke into the biggest smile when she saw her brother. I have never seen Sara so happy to see her brother. It was obvious that them being together today meant a lot to them both. Seeing that made my day. I have always cherished when my children visibly enjoyed being together. That is a special bond. But she was so happy to see him, and followed every movement of his.
After Michael opening her presents for her, and acting the absolute fool with them (and a little Vanna White...) she got a bit tired. She was fighting taking a nap, but it was obvious she was wiped out. So, I went to the car to get her cat.
I ran the de-shedding comb over him in the parking lot. Good thing the wind was blowing, because the pile of fur I was getting off of him was enough to cover another cat...
When I brought him into her room the smile started and she never really did take her eyes off of him. I helped her stroke him, and he just sat and purred. When her ventilator went to alarm later on, he was jumping off the bed bolting for the cat carrier. I ended up putting the carrier on the bed, and her arm inside it. Then the cat nestled down on top of her arm and went back to purring. He had his girl. She had her cat. Grandma Sande, Michael and I just sat off to the side and let her have the fur therapy and peacefulness only her cat could give her.
At the end of the day, she was happy and content. Although it was by no means an easy Christmas, I think the family came through it ok. I think we were able to keep as much of our spirit and traditions in it as possible, within the limitations of environment and current condition of Sara, and still manage to give Michael a fairly special time just for him.
I am exhausted, mentally, emotionally and physically. My Santa (Don) was so sweet about our lack of time together today. He is very understanding, but I don't like that he has to be right now. He just really helped keep me moving and trying to make this the best christmas season I could for my family.
In the end, we still did celebrate life and hope. And you can't get much better than that...
Sunday, December 23, 2007
Sunday Update
It was mentioned in the last entry that Sara was in a bit of pain, what was not mentioned was the source/area. Sara has had a bit of pain in her throat . This is most likely linked to the tube in her throat that she is breathing through. It has previously not caused her any pain, but since she is stronger now and moving a lot more when she coughs, it is likely that the new movements are causing the tube to rub inside her throat. The X-ray taken will help them figure out what length a new tube should be in order to deal with the pain. Hurray for non surgery solutions! (All they'll have to do is slide out the old tube and slide in a new one. It takes about 4 seconds.)
Recently Sara has been running a bit of a fever for a few days now. The nurses took some samples today and are looking into the cause. She was a bit tired today. She had been up in the chair for two hours or so before I got there. Also, they had dropped the pressure support on her ventalator for a few days, and she seemed to be wearing out because of it so they boosted the pressure support today for a while to give her a bit of a break. Dr. Immel (one of our high school science teachers) came by again today for a visit. He and I talked to her for several hours. Mostly about our class mates and memories of high school. I tried working with the letter board, but I'm not good at it at all. Sara was able to confirm my suspicions that I was screwing it up pretty badly, so we agreed that I should give up on it for the time being. After Dr. Immel left, I had the nurse help me shift her to one side so I could climb into bed with her and read to her. We're almost done with The Hobbit. Her hands and feet are still drying out on a regular basis, so I spent some time on her hands and feet with the scrubbing glove and some lotion/moisturizer stuff. She said that it felt better after I was done. When I left for the evening, I asked if she wanted to sleep, She said no. So I turned on the TV for her and left her watching Shrek.
~Daniel H.
Recently Sara has been running a bit of a fever for a few days now. The nurses took some samples today and are looking into the cause. She was a bit tired today. She had been up in the chair for two hours or so before I got there. Also, they had dropped the pressure support on her ventalator for a few days, and she seemed to be wearing out because of it so they boosted the pressure support today for a while to give her a bit of a break. Dr. Immel (one of our high school science teachers) came by again today for a visit. He and I talked to her for several hours. Mostly about our class mates and memories of high school. I tried working with the letter board, but I'm not good at it at all. Sara was able to confirm my suspicions that I was screwing it up pretty badly, so we agreed that I should give up on it for the time being. After Dr. Immel left, I had the nurse help me shift her to one side so I could climb into bed with her and read to her. We're almost done with The Hobbit. Her hands and feet are still drying out on a regular basis, so I spent some time on her hands and feet with the scrubbing glove and some lotion/moisturizer stuff. She said that it felt better after I was done. When I left for the evening, I asked if she wanted to sleep, She said no. So I turned on the TV for her and left her watching Shrek.
~Daniel H.
Saturday, December 22, 2007
Presents
Hello everyone, this is Denise, Sara’s step-mom. First, I want to express my appreciation too for all those—and there were many—who were involved in the Benefit Concert last Sunday. It was an exuberant mix of the secular and the spiritual, and I really enjoyed myself much more than I expected under the circumstances. I am sure that Kristina is grateful for some funds to cover things beyond what my Kaiser insurance allows.
Tracy and I visited Sara this morning, and her room had undergone quite a transformation with cards, tchotchkes, and decorations—many of them from those who had attended the concert. We brought her some Christmas presents, two CDs (including one of classical music called Sweet Dreams), and peppermint scented foot gel. She was already in her chair and the most awake I have seen her. I must admit I have been a little skeptical of what others have reported here. She just has seemed not very responsive, except for one of our previous visits—on that one she gave opinions on what CD she wanted to listen to, and gave us the “S” and “A” when we asked her to spell her name on the spelling board. Today Tracy used her new color-coded spelling board to elicit whatever she wanted to tell us, but it took some getting used to. We didn’t want put words in her mouth (so to speak) by assuming what letter she might choose. As she responded, I took down the letters as he called them out. She signaled, “I want w” and then chose the row that started with the letter I, but bypassed that letter. Tracy told her that selecting a letter any farther in that row would not make a sensible English word. The nurse came in about then, so we all took a break. Spongebob was on at 11am, and she watched some of that until the ICU doctor came in. He asked her questions until she was able to indicate exactly where she was having pain, and they scheduled her for an X-ray. The team decided to put her back into bed and do some “personal maintenance”, so we stepped out for a while to give her privacy.
Once she was back in bed, Tracy tried the spelling board again. She seemed to pick up where she had left off—continuing with “wake me”, although she did not indicate that that was the end of the word or of the sentence. If put together, she said “I want wake me”. I am not sure that that is how she meant it, or if that was the complete thought, but it certainly was nice to see them working together.
Tracy’s glasses had broken last night and he had to get some made before dark (as he only had sunglasses to wear), so he explained to Sara why our visit was shorter than usual. I know that he has been disappointed too that he has not experienced what others have reported here in regard to movement or smiles. So when Tracy asked me if I had anything else to say to her, I asked “Can you smile for your Daddy?” (Sorry, I think that’s what she used to call him, and I just can’t use the term “father” as I have never heard her refer to him that way), and there was no response. Then I asked, “Would you like to smile for Daddy, but you just can’t?” and she indicated, “Yes”.
Tracy and I visited Sara this morning, and her room had undergone quite a transformation with cards, tchotchkes, and decorations—many of them from those who had attended the concert. We brought her some Christmas presents, two CDs (including one of classical music called Sweet Dreams), and peppermint scented foot gel. She was already in her chair and the most awake I have seen her. I must admit I have been a little skeptical of what others have reported here. She just has seemed not very responsive, except for one of our previous visits—on that one she gave opinions on what CD she wanted to listen to, and gave us the “S” and “A” when we asked her to spell her name on the spelling board. Today Tracy used her new color-coded spelling board to elicit whatever she wanted to tell us, but it took some getting used to. We didn’t want put words in her mouth (so to speak) by assuming what letter she might choose. As she responded, I took down the letters as he called them out. She signaled, “I want w” and then chose the row that started with the letter I, but bypassed that letter. Tracy told her that selecting a letter any farther in that row would not make a sensible English word. The nurse came in about then, so we all took a break. Spongebob was on at 11am, and she watched some of that until the ICU doctor came in. He asked her questions until she was able to indicate exactly where she was having pain, and they scheduled her for an X-ray. The team decided to put her back into bed and do some “personal maintenance”, so we stepped out for a while to give her privacy.
Once she was back in bed, Tracy tried the spelling board again. She seemed to pick up where she had left off—continuing with “wake me”, although she did not indicate that that was the end of the word or of the sentence. If put together, she said “I want wake me”. I am not sure that that is how she meant it, or if that was the complete thought, but it certainly was nice to see them working together.
Tracy’s glasses had broken last night and he had to get some made before dark (as he only had sunglasses to wear), so he explained to Sara why our visit was shorter than usual. I know that he has been disappointed too that he has not experienced what others have reported here in regard to movement or smiles. So when Tracy asked me if I had anything else to say to her, I asked “Can you smile for your Daddy?” (Sorry, I think that’s what she used to call him, and I just can’t use the term “father” as I have never heard her refer to him that way), and there was no response. Then I asked, “Would you like to smile for Daddy, but you just can’t?” and she indicated, “Yes”.
wednesday update,,,,, late
First I would like to appologize for the lateness of my updatel. I have not had access to the internet for several days. Anyway...
When I got to the hospital, Sara had just finished working with the physical therapist . They had been working for half an hour. They were working with the letter board. The Therapist asked Sara several questions to which sara spelled out anwsers. I don't know exactly what the questions were, but I got to see the anwsers. The therapist wrote them down as they were being spelled. The vague frame of questions was what her job was. Any pets. And any siblings.
Pet Nurse
Cat
Dusty
Male
Brother
Michael
Those are the anwsers she spelled.
She was tired from the physical therapy but she didn't want to sleep or watch TV or listen to music or even have me read to her. Instead, she wanted me to talk to her. So I crawled up into her bed and sat at her feet and talked to her about any random thing that poped into my mind. After I ran out of things to talk about, I asked if she wanted me to put on some music or read to her. But no, she wanted me to keep talking. She always did like to sit and talk with me. Unfortunatly, im more of a listener and am not a prominent figure in any conversation. I did my best to keep up intersting stuff, but eventually gave up and switched to reading. I got lots of smiles durring the evening. That made me happy. I love seeing her smile.
~Daniel H.
When I got to the hospital, Sara had just finished working with the physical therapist . They had been working for half an hour. They were working with the letter board. The Therapist asked Sara several questions to which sara spelled out anwsers. I don't know exactly what the questions were, but I got to see the anwsers. The therapist wrote them down as they were being spelled. The vague frame of questions was what her job was. Any pets. And any siblings.
Pet Nurse
Cat
Dusty
Male
Brother
Michael
Those are the anwsers she spelled.
She was tired from the physical therapy but she didn't want to sleep or watch TV or listen to music or even have me read to her. Instead, she wanted me to talk to her. So I crawled up into her bed and sat at her feet and talked to her about any random thing that poped into my mind. After I ran out of things to talk about, I asked if she wanted me to put on some music or read to her. But no, she wanted me to keep talking. She always did like to sit and talk with me. Unfortunatly, im more of a listener and am not a prominent figure in any conversation. I did my best to keep up intersting stuff, but eventually gave up and switched to reading. I got lots of smiles durring the evening. That made me happy. I love seeing her smile.
~Daniel H.
Tuesday, December 18, 2007
Sunshine on a rainy day
Sara was so bright and aware today.
She worked with the physical therapist today. Last time the therapist did not see very much to work with, so they said they would be back in 2 weeks - to give her some healing time. Well, today the PT could definately notice. She was so excited that they worked a little on everything. She also worked with the letter board and spelled out her name, and blue. Progress.
She also spent a fair amount of time in the cardiac chair. She is getting stronger each time she is in there. The nurses have to watch her now, as she is getting stronger. When she coughs, she lunges forward now and they have to make sure she doesn't launch out of the chair. Good strong coughs.
OH...and they reduced the ventilator support lastnight. She is down from 13 to 10 on support. That is good and certainly the right direction. She is also maintaining her tidal volumes (amount of air you take in with each breath) as well as her oxygen saturation.
But - what I personally consider the best of all - she's swallowing. They've been giving her multiple periods a day with the front of her collar off (and her lying flat, so as not to move her neck too much) and allowing her to work her own jaw. Well, she knows that she has to be able to clear her own secretions before that can ever happen. Well, today she did most of them and the nurses were floored.
I asked her if she wanted me to start sneaking her some nutella, and she does... :)~
She was also able to open her mouth about an inch, and had me brush her teeth. She was so happy to let me get in there and get that taste out. I can just imagine...your jaw being all locked up for weeks...well, all better now...
When she coughs, she is also making the classic oval mouth and sticking her tongue out. All good. She did, however, stick her tongue out at me just for fun. Punk...
She is squeezing with both hands now...just a little, but it is definate and controlled. Yeah...tell Sara that she can't do anything...
And she did move her toes, both sides, on command. Again, a little, but she was in such a show off mood today.
I asked her if she saved that up just for me, and she indicated Yes. I told her that I love her so much, and totally believe she can do anything, and I'm so proud and amazed that she is doing this much so soon after the stroke. Today was a good day...tomorrow she may not be able to dothe same stuff, but today she did...oh, and the nurses saw...even better...
I told her all about the concert on Sunday. I read the christmas cards from the children. She wanted me to put them all up around her room. I also hung one of each ornament made for her. The room looks more and more like HER room, than a hospital room. perfect...
You know...my girl is really something. I have been beat today. I couldn't sleep last night, so I called the hospital to check on her. She couldn't sleep either.... I told the nurse to tell Sara to go to sleep so I could... :) She settled down, but I was already firing up my laptop by then.
I did two clients today, plus took the truck to the shop (hmm...is oil really required...my truck thinks its optional), then drove to Sacramento, saw Sara, and drove back. Then hung out with Michael and Daniel eating pizza. I'm baked like a pie, so I am going to close this entry with goodnight. My daughter showed me sunshine on a rainy day...we all get a piece of that light today...
She worked with the physical therapist today. Last time the therapist did not see very much to work with, so they said they would be back in 2 weeks - to give her some healing time. Well, today the PT could definately notice. She was so excited that they worked a little on everything. She also worked with the letter board and spelled out her name, and blue. Progress.
She also spent a fair amount of time in the cardiac chair. She is getting stronger each time she is in there. The nurses have to watch her now, as she is getting stronger. When she coughs, she lunges forward now and they have to make sure she doesn't launch out of the chair. Good strong coughs.
OH...and they reduced the ventilator support lastnight. She is down from 13 to 10 on support. That is good and certainly the right direction. She is also maintaining her tidal volumes (amount of air you take in with each breath) as well as her oxygen saturation.
But - what I personally consider the best of all - she's swallowing. They've been giving her multiple periods a day with the front of her collar off (and her lying flat, so as not to move her neck too much) and allowing her to work her own jaw. Well, she knows that she has to be able to clear her own secretions before that can ever happen. Well, today she did most of them and the nurses were floored.
I asked her if she wanted me to start sneaking her some nutella, and she does... :)~
She was also able to open her mouth about an inch, and had me brush her teeth. She was so happy to let me get in there and get that taste out. I can just imagine...your jaw being all locked up for weeks...well, all better now...
When she coughs, she is also making the classic oval mouth and sticking her tongue out. All good. She did, however, stick her tongue out at me just for fun. Punk...
She is squeezing with both hands now...just a little, but it is definate and controlled. Yeah...tell Sara that she can't do anything...
And she did move her toes, both sides, on command. Again, a little, but she was in such a show off mood today.
I asked her if she saved that up just for me, and she indicated Yes. I told her that I love her so much, and totally believe she can do anything, and I'm so proud and amazed that she is doing this much so soon after the stroke. Today was a good day...tomorrow she may not be able to dothe same stuff, but today she did...oh, and the nurses saw...even better...
I told her all about the concert on Sunday. I read the christmas cards from the children. She wanted me to put them all up around her room. I also hung one of each ornament made for her. The room looks more and more like HER room, than a hospital room. perfect...
You know...my girl is really something. I have been beat today. I couldn't sleep last night, so I called the hospital to check on her. She couldn't sleep either.... I told the nurse to tell Sara to go to sleep so I could... :) She settled down, but I was already firing up my laptop by then.
I did two clients today, plus took the truck to the shop (hmm...is oil really required...my truck thinks its optional), then drove to Sacramento, saw Sara, and drove back. Then hung out with Michael and Daniel eating pizza. I'm baked like a pie, so I am going to close this entry with goodnight. My daughter showed me sunshine on a rainy day...we all get a piece of that light today...
Monday, December 17, 2007
Sunday/Monday Update
Sara demonstrated to me sarcasm on sunday. I told her that I loved her, and then I asked if she loved me. She gave me 2 blinks for no.... and then gave me a huge smile! A big toothy grin, buck teeth and all. I asked if she was being sarcastic, she said yes. So that made me happy. I washed Sara's hands and feet with lotion and an exfoliating glove, those parts don't get quite as much attention from the nurses during her normal cleaning. I also got a chance to clean where her blood pressure cuff was. Nothing exciting clinically. Her breathing has been stable with the exception of coughing
Today (monday) was a short visit. I read to her from the card/book that a bunch of the Tech High students wrote in. although one of the pages fell out when I picked it up and didn't realize it until after i left. It will have to be read to her another time. I read more of The Hobbit to her. She is enjoying it. Nothing new clinically. No news is good news in a way, I guess.
~Daniel H.
Today (monday) was a short visit. I read to her from the card/book that a bunch of the Tech High students wrote in. although one of the pages fell out when I picked it up and didn't realize it until after i left. It will have to be read to her another time. I read more of The Hobbit to her. She is enjoying it. Nothing new clinically. No news is good news in a way, I guess.
~Daniel H.
A Holiday Concert for Sara
I can't begin to express enough gratitude for the people who put this beautiful event together, donated, volunteered, and attended. Sara would have loved this event... I can't wait for her to see the DVD.
The event was decorated beautifully. I was immediately taken aback by some of my favorite pictures of Sara, blown up large. I love that face. And miss seeing her in action. Within the first 10 minutes there I was in tears, when the first song on the music was "I'll be home for Christmas."
There was food from Sally Tomatoes (love their food...) and Fregenes pizza. There were roving carolers, pictures with Santa. Oh. and the kids had a table to make Christmas cards for Sara. So sweet.
There were auctions of donated merchandise and services. Such generosity from the businesses in Cotati/Rohnert Park...this is why I patronize my local businesses...because they truly come together when someone is in need...
There were two bands, Blue Moon (R&B - very good, gotta go see them. their rendition of "ain't too proud to beg" was so good - and they have full brass up front...), and Jam Pact (Michael knew them from playing at Hanna. He hung out with the band after the event and talked bass...) Jam Pact played Sara Smile from Hall and Oates. I've butchered that song to her so many times since she was a baby...they did it justice...
My favorite part was the choir from Community Baptist Church. I love a good church choir. And having gone to church with Don a few times, I have seen some real good ones. They were very nice, and a very loving group of angels. They started off their day singing and came out this evening to raise up their voices to the Lord on behalf of my Sara. Michael got such a kick out of the choir. He knows I've gone to church with Don and his Mother and asked me if black church choirs are like that, or like in the movies. I told him that yes, and more. I told him about the choir at Glide Memorial (Don and I were there when they filmed the church scenes and choir for a movie (The pursuit of Happyness with Will Smith)... I love a good choir. I told him I'd ask Don's Mom if Michael and I could come up and go to church with her. He'll love it.
There were just so many great things about tonight. The Rotary hosted the event. The 20/30 club donated two bicycles valued at $500 each, people gave time and energy, and strength and hope just for her. I'm still a bit dazed and overwhelmed at everything that was done.
None of it would have been done without Andre' Morrow calling me up and saying that he wanted to do something for Sara. He is not the kind of person who wants a spotlight on him, and he is quick to spread the recognition around, but this is my blog...
Andre' Morrow is amazing. He is such a loving, and talented man. His family is beautiful and kind and they are such an asset to the human race. He took time out of his business and called upon his resources, to come together for Sara. He could have just taken care of the car insurance stuff and been on his way - but he didn't. He called together a very talented and generous group of people to put together a benefit for her.
The Friends of Sara - what can you say about a group of selfless, dedicated people... I think only two people in the group have even met Sara, but they worked as if she were their own. I know what it takes to put on an event, even if you only have to take care of one aspect. It is an investment in time, your resources, your talent. And these people did so out of love and hope for someone most have never met. What do you say about a group of people who would do that? If you find the words, send them to me...
I know there are so many more people that I want to tell you about, to recognize, to thank. I will have to do it later. This was a hard day for me, even though I didn't have to help with the benefit.
It was very emotional and a lot to take in. I was so glad that her father Tracy, stepmom Denise, stepbrother Andrew, stepdad Mike and brother Michael were all there. It is the first time in way, WAY, too long, that we were all in the same room. Well, all except for Sara. But she is the reason we are all together. At one point I looked at Denise, and she smiled at me. That was so nice. During the reception I saw Michael and Tracy goofing around in front of Mike. I was proud to introduce Andrew to people - she recognizes him as her "big brother", despite the confusing family dynamic. And, of course, to see Michael - so happy to have most of his family in the same room - and working together to help the sister he loves so much - he had his family surrounding him, too. I am grateful that this event could bring us all together for a singular reason.
I can't wait to show her the DVD of the event.
The event was decorated beautifully. I was immediately taken aback by some of my favorite pictures of Sara, blown up large. I love that face. And miss seeing her in action. Within the first 10 minutes there I was in tears, when the first song on the music was "I'll be home for Christmas."
There was food from Sally Tomatoes (love their food...) and Fregenes pizza. There were roving carolers, pictures with Santa. Oh. and the kids had a table to make Christmas cards for Sara. So sweet.
There were auctions of donated merchandise and services. Such generosity from the businesses in Cotati/Rohnert Park...this is why I patronize my local businesses...because they truly come together when someone is in need...
There were two bands, Blue Moon (R&B - very good, gotta go see them. their rendition of "ain't too proud to beg" was so good - and they have full brass up front...), and Jam Pact (Michael knew them from playing at Hanna. He hung out with the band after the event and talked bass...) Jam Pact played Sara Smile from Hall and Oates. I've butchered that song to her so many times since she was a baby...they did it justice...
My favorite part was the choir from Community Baptist Church. I love a good church choir. And having gone to church with Don a few times, I have seen some real good ones. They were very nice, and a very loving group of angels. They started off their day singing and came out this evening to raise up their voices to the Lord on behalf of my Sara. Michael got such a kick out of the choir. He knows I've gone to church with Don and his Mother and asked me if black church choirs are like that, or like in the movies. I told him that yes, and more. I told him about the choir at Glide Memorial (Don and I were there when they filmed the church scenes and choir for a movie (The pursuit of Happyness with Will Smith)... I love a good choir. I told him I'd ask Don's Mom if Michael and I could come up and go to church with her. He'll love it.
There were just so many great things about tonight. The Rotary hosted the event. The 20/30 club donated two bicycles valued at $500 each, people gave time and energy, and strength and hope just for her. I'm still a bit dazed and overwhelmed at everything that was done.
None of it would have been done without Andre' Morrow calling me up and saying that he wanted to do something for Sara. He is not the kind of person who wants a spotlight on him, and he is quick to spread the recognition around, but this is my blog...
Andre' Morrow is amazing. He is such a loving, and talented man. His family is beautiful and kind and they are such an asset to the human race. He took time out of his business and called upon his resources, to come together for Sara. He could have just taken care of the car insurance stuff and been on his way - but he didn't. He called together a very talented and generous group of people to put together a benefit for her.
The Friends of Sara - what can you say about a group of selfless, dedicated people... I think only two people in the group have even met Sara, but they worked as if she were their own. I know what it takes to put on an event, even if you only have to take care of one aspect. It is an investment in time, your resources, your talent. And these people did so out of love and hope for someone most have never met. What do you say about a group of people who would do that? If you find the words, send them to me...
I know there are so many more people that I want to tell you about, to recognize, to thank. I will have to do it later. This was a hard day for me, even though I didn't have to help with the benefit.
It was very emotional and a lot to take in. I was so glad that her father Tracy, stepmom Denise, stepbrother Andrew, stepdad Mike and brother Michael were all there. It is the first time in way, WAY, too long, that we were all in the same room. Well, all except for Sara. But she is the reason we are all together. At one point I looked at Denise, and she smiled at me. That was so nice. During the reception I saw Michael and Tracy goofing around in front of Mike. I was proud to introduce Andrew to people - she recognizes him as her "big brother", despite the confusing family dynamic. And, of course, to see Michael - so happy to have most of his family in the same room - and working together to help the sister he loves so much - he had his family surrounding him, too. I am grateful that this event could bring us all together for a singular reason.
I can't wait to show her the DVD of the event.
Sunday, December 16, 2007
Dad Time on saturday
Well Sara and I spent the day together yesterday. When I go there she had just come out of the chair. I watched the nurse give Sara’s Hair a good shampoo and rinse. Then it was time for me to leave cause Dad does not need to see the rest of her get cleaned, And I am sure Sara didn’t want me there for that either. When I came back about 30 minutes later, she was all set up all clean gear. I sat with her for a bit and talked to her. She was pretty tired from the morning routine and I asked her if she wanted me to turn out the light and make it quite for her. She said yes. I watched her nap for about an hour then she woke up. I suggested that we work on her letter board and we tried to spell out some words. That didn’t go so well. I think I was having a hard time understanding her blinks and she got frustrated. I assumed she meant something and she got pissed. I asked her if she wanted me to leave and she said yes. I didn’t want to make her more upset so I did. Kristina will check in with her on Monday and see if she is still made at me. My feelers where a little hurt cause I realy did want to spend as much time as I could with her. Well there is always next weekend, and I will try not to assume what she meeans.
Friday, December 14, 2007
tough day all around...
Sara got to start off the day being more poked and prodded than usual these days. Her PICC line had sprung a leak and needed to be replaced. The PICC line is an IV that snakes through the veins to above the heart in the superior venacava. It is a more long-term IV.
Well, hers split on one side, so it needed to be removed, and another one put in. I spoke to the PICC nurse and consented to the procedure. So that is how she got to get her day underway.
They didn't move her into a cardiac chair today. Some person called the hospital and complained that the lift team was slow in responding to patient moves. Well, that person was me. Yesterday the lift team did not respond to their pages to move Sara back to bed. She was made to sit in dirtied linens for an hour and a half, before her nurse was so fed up waiting that she asked other nurses going off shift to help her move Sara back to bed. I had lost my patience 45 minutes before, and cleaned her as best I could and somehow managed to get a towel under her myself. So, today I called and raised holy hell with the hospital.... I guess that kind of backfired. Wanted them to have a second lift team, dedicated to the critical care floor - not decide to keep her in the bed only today...hmmm...
So, I had pulled myself out of bed midday, only because my phone was blowing up repeatedly and went in to do some work. My mind, and heart, just weren't in it. Its not good for a person to be this sad...
I called late this afternoon to check on my girl, only to find out that she was in respiratory distress. Her tidal volumes (how much she inhales) had dropped from the mid 500s to 200 and below, and she was laboring. I threw my laptop in the bag and ran out of the door to Sacto.
Rush hour. Great. And goody two shoes me not willing to weave like a maniac just to get through. I called the hospital on my way...her nurse couldn't talk to me (said another nurse) - call back in 30 minutes. I'm sorry, but 30 minutes is an absolute eternity when you know your child is having trouble breathing and 4 minutes is the maximum you can't do that without damage... So I called back in what seemed like 10, but was probably 2 minutes. I asked the person who answered if Nurse-Cindy was done with the procedure in Room 3025. (ok...so I was fishing to see what was going on...its my kid). Nurse said "no" and that Dr. Pulmonology was in there. Ok, I thought to myself, at least the pulmonologist was there, and he will be on top of this. I heard her ventilator alarming in the background, but not the real bad alarm that says she wasn't breathing at all. So, I put my foot down and made my way to the hospital.
Daniel called me a few minutes later. He told me that staff had kicked him and her friends out. They said she was decompensating and needed to help her. I told him that was bad - that is approaching respiratory arrest. I told him to send the friends home. They didn't need to be there, but he could stay and I would bring him back. I called back a few minutes later, figuring it was better to allow him some support while it was scary. Having been in that situation countless times in the last 6 weeks, the only thing that kept me from flying off the face of the earth was talking to Don or sending him a text message if I couldn't talk. I knew if he knew I was scared he'd send me his strength and love, like he would give me if he were there.
I got a phone call about 15 minutes from Nurse-Cindy. She opened with "she's ok. everything is fine now." An opening I actually appreciated. She explained that Sara's volumes had gone down more and then her oxygen saturations had dropped as well. They had to move fast and Dr. Pulmonology had taken a bronchoscope in with him in case he needed it (to go into her lungs and see what the heck was going on.) He ended up not needing it, as he quickly determined that she had a blockage. They tried suctioning it out, but the nurses couldn't. He got in there and was able to pull a big "plug" out of the end of her breathing tube..just beyond the reach of the regular suction catheter. Well, he got it and just in time. According to her, he was about to have to pull the current traechestomy completely out and put an emergency tube in. I am sure Sara was scared out of her whits...
I finally made it to the hospital and into the room. I'm checking vent settings, monitors, her color, taking inventory, looking in her face, assessing everything. Then I stood next to the bed, took her hand, and took a deep breath and let it out. ...she's ok...she's still here...she's ok...
I started talking to her.
Mom: you gave us quite a scare. were you scared?
Sara: yes
Mom: are you ok now? feel like you can breath ok?
Sara: yes
Mom: are you tired after all of that?
Sara: no
Mom: wow. that's good. you're getting stronger.
Sara: yes
I take another long slow breath and let it out...almost like a sigh of relief. ...she's ok...she says so...
Sara is searching my face. I'm at a blank of what to say or do now. I'm just standing there, looking back at her while I stroke her soft arm with one hand and hold her hand with the other.
Mom: you're looking at me...
Sara: yes
Mom: is everything ok?
Sara: no
and then I know. She can see the sadness in my face.
Mom: you can see it in my face?
Sara: yes
Mom: you're ok Sara, you really are. the sadness is something else
Sara: looks at me, waiting for me to explain...
Mom: Don broke up with me. that's what it is...
Sara: her eyes get wide, then "no"
Mom: yes
I concentrate on that arm and hand, rubbing gently, not wanting to keep talking about it. I look up and Sara has started to cry. She knows how much he means to me.
Mom: you're crying. are you in pain?
Sara: no
Mom: are you crying for me?
Sara: yes
Mom: oh, baby girl...you shouldn't cry...not for me...i'm the mom. I just wanted you to know why I was sad, so you didn't think it was something wrong with you. ok?
Sara: yes
I just looked into her face, seeing her love for me and looking back with my love for her. We end up staring into each others eyes a lot. We know each other. Beyond being my daughter, she is also a woman I really like. She and I will spend hours on my bed, talking about this and that, her boyfriend, my boyfriend, this work thing, that road trip...stuff. I miss that.
Daniel and I stayed for a few more hours. I stepped back and let him be with her. They are so cute together, and a great source of comfort to each other. He's perfectly happy to drape her hand over his head just to feel the warmth.
On the long drive home I was rolling around the thoughts in my head. My baby girl cried for me... In the midst of being in the hospital for the last 6 weeks, quadraplegic, on a ventilator, and just having had respiratory distress, she cried for me... that messed me up... its messing me up now just thinking about it. she knows how sad I am. I couldnt' hide it from her. I haven't shed tears in weeks - feeling almost all cried out from this unbelievable string of events. But, on that long drive home, rolling around in my thoughts, they started... little rivulets rolling down cheeks flushed from fighting it... vision blurred in waves as they well and spill... a person shouldn't be this sad...
Well, hers split on one side, so it needed to be removed, and another one put in. I spoke to the PICC nurse and consented to the procedure. So that is how she got to get her day underway.
They didn't move her into a cardiac chair today. Some person called the hospital and complained that the lift team was slow in responding to patient moves. Well, that person was me. Yesterday the lift team did not respond to their pages to move Sara back to bed. She was made to sit in dirtied linens for an hour and a half, before her nurse was so fed up waiting that she asked other nurses going off shift to help her move Sara back to bed. I had lost my patience 45 minutes before, and cleaned her as best I could and somehow managed to get a towel under her myself. So, today I called and raised holy hell with the hospital.... I guess that kind of backfired. Wanted them to have a second lift team, dedicated to the critical care floor - not decide to keep her in the bed only today...hmmm...
So, I had pulled myself out of bed midday, only because my phone was blowing up repeatedly and went in to do some work. My mind, and heart, just weren't in it. Its not good for a person to be this sad...
I called late this afternoon to check on my girl, only to find out that she was in respiratory distress. Her tidal volumes (how much she inhales) had dropped from the mid 500s to 200 and below, and she was laboring. I threw my laptop in the bag and ran out of the door to Sacto.
Rush hour. Great. And goody two shoes me not willing to weave like a maniac just to get through. I called the hospital on my way...her nurse couldn't talk to me (said another nurse) - call back in 30 minutes. I'm sorry, but 30 minutes is an absolute eternity when you know your child is having trouble breathing and 4 minutes is the maximum you can't do that without damage... So I called back in what seemed like 10, but was probably 2 minutes. I asked the person who answered if Nurse-Cindy was done with the procedure in Room 3025. (ok...so I was fishing to see what was going on...its my kid). Nurse said "no" and that Dr. Pulmonology was in there. Ok, I thought to myself, at least the pulmonologist was there, and he will be on top of this. I heard her ventilator alarming in the background, but not the real bad alarm that says she wasn't breathing at all. So, I put my foot down and made my way to the hospital.
Daniel called me a few minutes later. He told me that staff had kicked him and her friends out. They said she was decompensating and needed to help her. I told him that was bad - that is approaching respiratory arrest. I told him to send the friends home. They didn't need to be there, but he could stay and I would bring him back. I called back a few minutes later, figuring it was better to allow him some support while it was scary. Having been in that situation countless times in the last 6 weeks, the only thing that kept me from flying off the face of the earth was talking to Don or sending him a text message if I couldn't talk. I knew if he knew I was scared he'd send me his strength and love, like he would give me if he were there.
I got a phone call about 15 minutes from Nurse-Cindy. She opened with "she's ok. everything is fine now." An opening I actually appreciated. She explained that Sara's volumes had gone down more and then her oxygen saturations had dropped as well. They had to move fast and Dr. Pulmonology had taken a bronchoscope in with him in case he needed it (to go into her lungs and see what the heck was going on.) He ended up not needing it, as he quickly determined that she had a blockage. They tried suctioning it out, but the nurses couldn't. He got in there and was able to pull a big "plug" out of the end of her breathing tube..just beyond the reach of the regular suction catheter. Well, he got it and just in time. According to her, he was about to have to pull the current traechestomy completely out and put an emergency tube in. I am sure Sara was scared out of her whits...
I finally made it to the hospital and into the room. I'm checking vent settings, monitors, her color, taking inventory, looking in her face, assessing everything. Then I stood next to the bed, took her hand, and took a deep breath and let it out. ...she's ok...she's still here...she's ok...
I started talking to her.
Mom: you gave us quite a scare. were you scared?
Sara: yes
Mom: are you ok now? feel like you can breath ok?
Sara: yes
Mom: are you tired after all of that?
Sara: no
Mom: wow. that's good. you're getting stronger.
Sara: yes
I take another long slow breath and let it out...almost like a sigh of relief. ...she's ok...she says so...
Sara is searching my face. I'm at a blank of what to say or do now. I'm just standing there, looking back at her while I stroke her soft arm with one hand and hold her hand with the other.
Mom: you're looking at me...
Sara: yes
Mom: is everything ok?
Sara: no
and then I know. She can see the sadness in my face.
Mom: you can see it in my face?
Sara: yes
Mom: you're ok Sara, you really are. the sadness is something else
Sara: looks at me, waiting for me to explain...
Mom: Don broke up with me. that's what it is...
Sara: her eyes get wide, then "no"
Mom: yes
I concentrate on that arm and hand, rubbing gently, not wanting to keep talking about it. I look up and Sara has started to cry. She knows how much he means to me.
Mom: you're crying. are you in pain?
Sara: no
Mom: are you crying for me?
Sara: yes
Mom: oh, baby girl...you shouldn't cry...not for me...i'm the mom. I just wanted you to know why I was sad, so you didn't think it was something wrong with you. ok?
Sara: yes
I just looked into her face, seeing her love for me and looking back with my love for her. We end up staring into each others eyes a lot. We know each other. Beyond being my daughter, she is also a woman I really like. She and I will spend hours on my bed, talking about this and that, her boyfriend, my boyfriend, this work thing, that road trip...stuff. I miss that.
Daniel and I stayed for a few more hours. I stepped back and let him be with her. They are so cute together, and a great source of comfort to each other. He's perfectly happy to drape her hand over his head just to feel the warmth.
On the long drive home I was rolling around the thoughts in my head. My baby girl cried for me... In the midst of being in the hospital for the last 6 weeks, quadraplegic, on a ventilator, and just having had respiratory distress, she cried for me... that messed me up... its messing me up now just thinking about it. she knows how sad I am. I couldnt' hide it from her. I haven't shed tears in weeks - feeling almost all cried out from this unbelievable string of events. But, on that long drive home, rolling around in my thoughts, they started... little rivulets rolling down cheeks flushed from fighting it... vision blurred in waves as they well and spill... a person shouldn't be this sad...
Thursday - Sara ok...Mom not...
Sara is doing ok today. Was up in the chair for 5 full hours today and tolerated it very well. Her nurse told me that she was watching TV, watching what was going on in the nurses station, paying attention to anything going on around her. The nurse even opened the blinds to the nursing station and jacked up her chair so she could watch them outside working.
A little scenery change is good for the girl. She's been staring at walls and ceiling for 6 weeks now.
During trying to take some blood from her PICC line (long internal IV that ends above the heart) they found that it had a leak. They called her doctor and the PICC nurse who said to seal it off and they would evaluate it in the morning. I was concerned, because if it has a leak then stuff can get in, as well. So I am going to ask them to culture it.
Then i got her all tucked into bed, scrubbed her face, rubbed lotion into her feet and hands and put her warm hat on her. She was tired from a very long day. I stayed for a while, until she started to fall asleep.
She's looking forward to seeing her friends on Friday.
I left, feeling like she had a good day and was glad to see me.
After the long drive home I got to talk to my son. He stayed up just for me. It was sweet of him. He wanted to make sure I got home ok and got a hug before he went to bed. Even at 16 he can be such a cuddly bear.
Then I saw my boyfriend online. This beautiful man has been my boyfriend for 3 years and the source of a lot of my strength of late. We started chatting, and then working on an issue that has come up. Well, long story short, he broke up with me. I feel like an astronaut on a space walk...and someone has just cut my oxygen line and my tether to the ship...
A little scenery change is good for the girl. She's been staring at walls and ceiling for 6 weeks now.
During trying to take some blood from her PICC line (long internal IV that ends above the heart) they found that it had a leak. They called her doctor and the PICC nurse who said to seal it off and they would evaluate it in the morning. I was concerned, because if it has a leak then stuff can get in, as well. So I am going to ask them to culture it.
Then i got her all tucked into bed, scrubbed her face, rubbed lotion into her feet and hands and put her warm hat on her. She was tired from a very long day. I stayed for a while, until she started to fall asleep.
She's looking forward to seeing her friends on Friday.
I left, feeling like she had a good day and was glad to see me.
After the long drive home I got to talk to my son. He stayed up just for me. It was sweet of him. He wanted to make sure I got home ok and got a hug before he went to bed. Even at 16 he can be such a cuddly bear.
Then I saw my boyfriend online. This beautiful man has been my boyfriend for 3 years and the source of a lot of my strength of late. We started chatting, and then working on an issue that has come up. Well, long story short, he broke up with me. I feel like an astronaut on a space walk...and someone has just cut my oxygen line and my tether to the ship...
Thursday, December 13, 2007
Wednesday..
Daniel and I went up to see Sara this evening. She was so cute. They already had her back in bed when we got there. So she had a couple of trips in the cardiac chair. She is doing better being upright, and being moved.
Nurse-Deborah took the front off of her collar (she was flat and supported). This allows her neck to "breathe" and the nurse did her traech care (cleaning, etc.). I took the opportunity to work with Sara on her jaw.
I massaged her jaw joints...tough muscles...and she tried to open her mouth. She can only get it about 1/4 inch on her own. I helped a bit with pressure on her lower jaw. It is so tight. I asked her if it felt tight to her and she indicated yes. After about 20 minutes of working her jaw we had only gotten it open 1/2 inch. Its clear that they are going to have to release her jaw another way. She was able to manage a swallow while we had the collar front off. It wasn't pretty, and sure was loud, but it was a swallow. We'll take it...
Daniel read another couple of chapters of the Hobbit to Sara. So cute they are together.
She's been stable all day. Only issue is a lot of fluid in her lungs and constantly suctioning it. They are giving her Lasix to get rid of the excess fluid. Nurse-Gabriella was getting her ready for the nights rest when we left her.
Wednesday, December 12, 2007
Tuesday update...
Sara is doing fine. Not much to update, as she is stable. The antibiotics and extra fluids seem to have taken care of her fevers. She's been getting into a steadier sleep/wake schedule. Her movements are pretty much the same.
We know that there is not going to be any lightening fast progress from this point. It is a long slow road ahead of her to gain back any functionality she can. The fact that her face is more expressive, and that she does have trace movements in all extremities is very encouraging, though. Some signals are getting through the damaged portion of her brain, albeit inconsistently.
Christmastime is hard on her this year. She's been crying a lot. This was going to be a big christmas for her. Daniel was going to be at our house Christmas Eve and we were going to do our swedish christmas. She and I had plans to decorate the house with everything we had, and bake like crazed swedish/german women. She loves christmas and its hard to see her sad over it happening almost without her. I'm going to make arrangements to sleep in her room christmas eve and see how much of it I can bring to her.
Daniel and I are going up to see her today after work. We'll update you on any changes.
We know that there is not going to be any lightening fast progress from this point. It is a long slow road ahead of her to gain back any functionality she can. The fact that her face is more expressive, and that she does have trace movements in all extremities is very encouraging, though. Some signals are getting through the damaged portion of her brain, albeit inconsistently.
Christmastime is hard on her this year. She's been crying a lot. This was going to be a big christmas for her. Daniel was going to be at our house Christmas Eve and we were going to do our swedish christmas. She and I had plans to decorate the house with everything we had, and bake like crazed swedish/german women. She loves christmas and its hard to see her sad over it happening almost without her. I'm going to make arrangements to sleep in her room christmas eve and see how much of it I can bring to her.
Daniel and I are going up to see her today after work. We'll update you on any changes.
Monday, December 10, 2007
Sunday at the Spa
We couldn't take her there in real life, so we brought the spa to Sara.
After a nice visit from her mentor, Dr. Immel, Daniel and I got a chance to give her a nice treat.
We started off by carefully trimming her hair back to even. They've taken all the franken-staples out of her head, so we are cleared to even up. then she got shampooed with her own shampoo from home. Took two washings to actually get her hair clean and smelling like her. She sweats so bad in that collar and on the pillow. I know it must be horribly uncomfortable.
Oh...and I brought her favorite Mushi pillow. This thing is squishy and pliable, filled with little beads. She likes to use it when she has a headache because it makes her feel like her head is floating and doesn't have any weight...
After trimming and washing her hair, we laid her back (in the chair) onto her favorite pillow and started the rest of her pampering. She got a head to toe gentle exfoliating with a special glove and baby oil soap, a thorough rinsing, a chance for her skin to air dry (as she was wrapped in her favorite towel from home), and a nice relaxing massage with lotion. I even wrapped her head in a towel to complete the ensemble'. She got a basic pedicure and a thorough foot massage and leg rub. Before we were done with that the girl was asleep in the chair. She looked so relaxed and happy...
Later the nurses came in to put her back to bed and I don't think she opened her eyes but for a minute. After we got her all propped up, tucked in, and her head back on her Moshi pillow she was once again off to sleep...
On our way home Daniel and I were both content that this was a very good day, for all of us. It did Daniel and I both a lot of good to make sure she was completely clean and comfortable. I am sure she appreciated it very much. Her peaceful sleep tells me so.
On the medical front - she is spiking temperatures and appears to have another infection. Dr. Intensivist put her on antibiotics for what looks like some more left lower lung infection and for what appears to be an abcessed jaw (ouch). We can't open her mouth beyond 3/8in to see for sure, but it is hot and swolen, giving all the proper indicators. I will call the therapists today to see if they can go release her jaw so they can examine her properly. I massaged her jaw yesterday and open to 3/8ths is all i got after some work. She was trying hard, but indicated yes when I asked her if it was just tight... Also, I did feel a little "tone" in her left hand as well yesterday. And her feet are as ticklish as ever...heheh...evil mommy...
After a nice visit from her mentor, Dr. Immel, Daniel and I got a chance to give her a nice treat.
We started off by carefully trimming her hair back to even. They've taken all the franken-staples out of her head, so we are cleared to even up. then she got shampooed with her own shampoo from home. Took two washings to actually get her hair clean and smelling like her. She sweats so bad in that collar and on the pillow. I know it must be horribly uncomfortable.
Oh...and I brought her favorite Mushi pillow. This thing is squishy and pliable, filled with little beads. She likes to use it when she has a headache because it makes her feel like her head is floating and doesn't have any weight...
After trimming and washing her hair, we laid her back (in the chair) onto her favorite pillow and started the rest of her pampering. She got a head to toe gentle exfoliating with a special glove and baby oil soap, a thorough rinsing, a chance for her skin to air dry (as she was wrapped in her favorite towel from home), and a nice relaxing massage with lotion. I even wrapped her head in a towel to complete the ensemble'. She got a basic pedicure and a thorough foot massage and leg rub. Before we were done with that the girl was asleep in the chair. She looked so relaxed and happy...
Later the nurses came in to put her back to bed and I don't think she opened her eyes but for a minute. After we got her all propped up, tucked in, and her head back on her Moshi pillow she was once again off to sleep...
On our way home Daniel and I were both content that this was a very good day, for all of us. It did Daniel and I both a lot of good to make sure she was completely clean and comfortable. I am sure she appreciated it very much. Her peaceful sleep tells me so.
On the medical front - she is spiking temperatures and appears to have another infection. Dr. Intensivist put her on antibiotics for what looks like some more left lower lung infection and for what appears to be an abcessed jaw (ouch). We can't open her mouth beyond 3/8in to see for sure, but it is hot and swolen, giving all the proper indicators. I will call the therapists today to see if they can go release her jaw so they can examine her properly. I massaged her jaw yesterday and open to 3/8ths is all i got after some work. She was trying hard, but indicated yes when I asked her if it was just tight... Also, I did feel a little "tone" in her left hand as well yesterday. And her feet are as ticklish as ever...heheh...evil mommy...
Sunday, December 9, 2007
Intersting Saturday
Yesterday was just too crazy after I got home. Thanks Kristina for updating everyone for me. Yea, the incident with the ventilator was bit exciting and it soon became apparent that she was not in distress. I think one of the RN really panicked because her stats where all off. That was because she had just gotten done coughing. That throws everything on the monitors out of whack.
This skin on Sara’s feet was pealing pretty badly. I took out some paper towels and put one under each foot and used another to remove the dead skin off of her. Then I rubbed lotion from her knees down. I asked her afterwards if that felt better, and she said yes. I know that had to be driving her nuts. It must have itched pretty badly. I talked with he a little bit and she started to cry. I asked if she wanted a huge and she said yes. I rested my head on her shoulder. I trying to hold her and yet not disturb anything connected to her. I felt so bad because I know she wanted me to scope her up and hold her and I couldn’t do it.
Afterwards they put her in the cardiac chair for 2nd time. We sat together and watch 2 painful hours of sponge bob square pants with her. I am not a big fan of that show, but she is. So I sat there with her and made a few bad jokes about the show. She smiled for me. I was so happy to see that. This was the first time since the accident that I got to spend any time with Sara while she was fully alert. Each time she was tired or unconscious. So today was huge for me.
I asked Sara if she wanted to be able to read some books while she recovers. She said yes. I have an old laptop rigged with a bunch of books on it. I told her once she can control one of her hands even a little, she would be able to turn the pages of the book herself. I asked if she like that idea and said yes. So when she is ready, the notebook computer is all set up for her.
Last week I had stated that Sara made a weak attempt to hold my hand. She did it again for me again on Saturday. I was surprised because Kristina had told me that she didn’t do it for her or the doctors. I asked her to do it again and she did. She can’t actually close her fingers, but she puts some tension on them so you can feel it when you pull against her them. I then asked her if she was doing that just for me. She answered yes. I was touched that she wanted to do something special for me, but I told her the doctors need to see her do it as well, otherwise they will think I am nuts. I made her promise to do it for others as well. She agreed to do it.
When it was time for her to settle down and go to sleep, she kept opening her eyes and checking to see if I was still there. I think she didn’t want me to leave. I told her would be back as soon as I could and that she needed to rest. She finally did around 9:30. I am sure Kristina will have an update for today.
This skin on Sara’s feet was pealing pretty badly. I took out some paper towels and put one under each foot and used another to remove the dead skin off of her. Then I rubbed lotion from her knees down. I asked her afterwards if that felt better, and she said yes. I know that had to be driving her nuts. It must have itched pretty badly. I talked with he a little bit and she started to cry. I asked if she wanted a huge and she said yes. I rested my head on her shoulder. I trying to hold her and yet not disturb anything connected to her. I felt so bad because I know she wanted me to scope her up and hold her and I couldn’t do it.
Afterwards they put her in the cardiac chair for 2nd time. We sat together and watch 2 painful hours of sponge bob square pants with her. I am not a big fan of that show, but she is. So I sat there with her and made a few bad jokes about the show. She smiled for me. I was so happy to see that. This was the first time since the accident that I got to spend any time with Sara while she was fully alert. Each time she was tired or unconscious. So today was huge for me.
I asked Sara if she wanted to be able to read some books while she recovers. She said yes. I have an old laptop rigged with a bunch of books on it. I told her once she can control one of her hands even a little, she would be able to turn the pages of the book herself. I asked if she like that idea and said yes. So when she is ready, the notebook computer is all set up for her.
Last week I had stated that Sara made a weak attempt to hold my hand. She did it again for me again on Saturday. I was surprised because Kristina had told me that she didn’t do it for her or the doctors. I asked her to do it again and she did. She can’t actually close her fingers, but she puts some tension on them so you can feel it when you pull against her them. I then asked her if she was doing that just for me. She answered yes. I was touched that she wanted to do something special for me, but I told her the doctors need to see her do it as well, otherwise they will think I am nuts. I made her promise to do it for others as well. She agreed to do it.
When it was time for her to settle down and go to sleep, she kept opening her eyes and checking to see if I was still there. I think she didn’t want me to leave. I told her would be back as soon as I could and that she needed to rest. She finally did around 9:30. I am sure Kristina will have an update for today.
Weekend Update
Apologies for the delay. I know a great many people follow Sara's Status very closely.
On Saturday Sara had a dad day. In the morning her father, Tracy, came and spent time with her. In the afternoon her step-dad, Mike, spent the remainder of the day.
I talked to Mike last night on his way home. He was going to do the update, but must have just gone to bed. He told me that they just basically hung out. He rubbed lotion into her hands and arms. They watched TV and listened to music.
At one point they had some excitement. Her ventilator failed and that got many nurses on a run into her room. In the flurry of activity a respiratory therapist connected a breathing bag to her stoma and gave her breaths, while someone else tried to figure out what was happening. When anything seems amiss with a patient they activate the code team, and they came running as well. It was quickly clear that Sara was not in respiratory distress and that the machine had simply failed. A new unit was brought in and programmed and the excitement receded, along with her vital signs... Mike said that when he left she was sleeping peacefully.
Daniel and I are up here today. Upon arriving we found Sara sweating and drenched. She had a fever. I went immediately into nurse-mode and started asking about cultures and tests. A few moments later her actual nurses were collecting specimens for testing - urine, blood, sputum. Any fever is an emergency, and I am concerned that the source has yet to be determined.
We got a few ice packs and cool rages and started to bring down her fever. One thing I learned from my mother was how to break a fever. A short time later she was down to 99 and visibly more comfortable. We wiped her down all over and pulled the many layers of covering off of her. Even with the fever down, her vital signs remain higher than normal (pulse/respiration).
Deciding to settle her down, Daniel is now reading to her and I have had her close her eyes and relax.
I went looking for a possible source of infection. I carefully checked the obvious choices (foley catheter, feeding tube, IV site) with everything looking ok. I then noticed that the staples in her belly button are still there. They should have been removed with the staples in her head, days ago. I let the nurse know. Then, while gently repositioning her head I noticed that her right cheek was swolen and red. I had not noticed that before, as she was flushed from the fever.
After touching her cheeks and mouth, it is obvious that she has some infection in her mouth or jaw. I alerted the nurse, who examined her and agrees. She has notified the doctor.
I told Sara that when the doctor comes in to examine her, I will be expecting her to cooperate and open that mouth. She has fought opening her mouth under all circumstances. She did acknowledge that it is her mouth that hurts. I told her that you have to be especially careful with oral infections, as they can cause heart issues and damage.
Daniel is reading to her right now. We are waiting for Dr. Immel to show up and visit with her. Afterwards, we will be giving her a spa treatment. Nice exfoliating bath, nice lotion rubdown, hair cut (even it up), facial, and pedicure. She is looking forward to the whole princess treatment, and we are looking forward to getting her completely clean and feeling fresh. (not that there is anything wrong with the bathing she gets nightly, but it is not as complete as we will do.)
On Saturday Sara had a dad day. In the morning her father, Tracy, came and spent time with her. In the afternoon her step-dad, Mike, spent the remainder of the day.
I talked to Mike last night on his way home. He was going to do the update, but must have just gone to bed. He told me that they just basically hung out. He rubbed lotion into her hands and arms. They watched TV and listened to music.
At one point they had some excitement. Her ventilator failed and that got many nurses on a run into her room. In the flurry of activity a respiratory therapist connected a breathing bag to her stoma and gave her breaths, while someone else tried to figure out what was happening. When anything seems amiss with a patient they activate the code team, and they came running as well. It was quickly clear that Sara was not in respiratory distress and that the machine had simply failed. A new unit was brought in and programmed and the excitement receded, along with her vital signs... Mike said that when he left she was sleeping peacefully.
Daniel and I are up here today. Upon arriving we found Sara sweating and drenched. She had a fever. I went immediately into nurse-mode and started asking about cultures and tests. A few moments later her actual nurses were collecting specimens for testing - urine, blood, sputum. Any fever is an emergency, and I am concerned that the source has yet to be determined.
We got a few ice packs and cool rages and started to bring down her fever. One thing I learned from my mother was how to break a fever. A short time later she was down to 99 and visibly more comfortable. We wiped her down all over and pulled the many layers of covering off of her. Even with the fever down, her vital signs remain higher than normal (pulse/respiration).
Deciding to settle her down, Daniel is now reading to her and I have had her close her eyes and relax.
I went looking for a possible source of infection. I carefully checked the obvious choices (foley catheter, feeding tube, IV site) with everything looking ok. I then noticed that the staples in her belly button are still there. They should have been removed with the staples in her head, days ago. I let the nurse know. Then, while gently repositioning her head I noticed that her right cheek was swolen and red. I had not noticed that before, as she was flushed from the fever.
After touching her cheeks and mouth, it is obvious that she has some infection in her mouth or jaw. I alerted the nurse, who examined her and agrees. She has notified the doctor.
I told Sara that when the doctor comes in to examine her, I will be expecting her to cooperate and open that mouth. She has fought opening her mouth under all circumstances. She did acknowledge that it is her mouth that hurts. I told her that you have to be especially careful with oral infections, as they can cause heart issues and damage.
Daniel is reading to her right now. We are waiting for Dr. Immel to show up and visit with her. Afterwards, we will be giving her a spa treatment. Nice exfoliating bath, nice lotion rubdown, hair cut (even it up), facial, and pedicure. She is looking forward to the whole princess treatment, and we are looking forward to getting her completely clean and feeling fresh. (not that there is anything wrong with the bathing she gets nightly, but it is not as complete as we will do.)
Friday, December 7, 2007
Presidential Well Wishes
Sara received this at my home today. Regardless of how you feel about him politically, it is nice to receive well wishes from the President of the United States:
Thursday, December 6, 2007
the porcupine enema...
I spent the day, ALL day, navigating our wonderful bureaucracy. I think I now understand why postal workers snap...
I'm going to vent now. So, if you are looking for the Sara update, scroll down. I'll make it easy to find.
It is amazing how many forms, forms and more forms it requires to apply for Social Security, Medi-CAL, state disability, etc. I think it is absolutely amazing. Everything in different formats. Everything in different sites. Some you fill out on the web, print out, gather hard copy materials for, and go sit and wait for an underpaid civil servant to glance over them and tell you that you forgot a form. Some you have to go by and pick up at the office, fill out at home, and mail in. All responses are handled by mail. If you mess something up, you get to start the process all over again.
Oh, and an especially nice wrinkle--I've had to prove my identity and guardian role at every juncture. As if some stranger would walk off the street into the Medi-CAL office and submit an application on my behalf...
At one point I had to just leave the Social Security office and go to the nearby public library. I couldn't think to fill out the massive SSI forms with all the yakita, cell phones, and TV going on in there. It was like trying to do the sunday crossword with the blender running... Even with the quiet, it still took me another 4 hours to fill out the associated forms. Then, they told me I had to print two forms with two copies each, and one form with 12 copies, and stand on my head, and recite the pledge of allegiance, backwards. And then I still have to come back, to check my submissions again, and if perfect it will take 120 days before her benefits will kick in.
I have half a mind (easy there...that's not an opening) to start a service where if you become disabled that there is a one stop clearinghouse to submit everything. You do your information once, and we take care of everything else... The other half of my mind says I'm crazy to want to get in the middle of this repeatedly. I think the latter one is going to win this one...
So, hopefully I have completed all the forms I need, correctly, and everything is in the pipeline for her. That way I won't have to repeat today's porcupine enema...
How is the girl today?
Sara has been fine today. Getting tied up with all the paperwork b.s. kept me from getting to work today, and then to see her. My boyfriend was such a dear and went to the hospital to hang out with Sara for a while. I hate for her to go a day without seeing a familiar face. I know it is hard enough to be trapped inside herself...I don't want her to get too lonely, too.
I called in to the ICU when Don was there. He put the phone up to her ear and I chit chatted to her about this and that...her cat...todays events...Dr. Immel's cute email...her brothers antics...and how much I miss her. I miss that kids voice. Her chirpy cheery "Hi Mom" when she comes home...even her "grmmssm" when she wakes up in the morning...all grumpy and sleepy.
I'm so gaga about my girl. I can't wait to see her tomorrow after work...
I'm going to vent now. So, if you are looking for the Sara update, scroll down. I'll make it easy to find.
It is amazing how many forms, forms and more forms it requires to apply for Social Security, Medi-CAL, state disability, etc. I think it is absolutely amazing. Everything in different formats. Everything in different sites. Some you fill out on the web, print out, gather hard copy materials for, and go sit and wait for an underpaid civil servant to glance over them and tell you that you forgot a form. Some you have to go by and pick up at the office, fill out at home, and mail in. All responses are handled by mail. If you mess something up, you get to start the process all over again.
Oh, and an especially nice wrinkle--I've had to prove my identity and guardian role at every juncture. As if some stranger would walk off the street into the Medi-CAL office and submit an application on my behalf...
At one point I had to just leave the Social Security office and go to the nearby public library. I couldn't think to fill out the massive SSI forms with all the yakita, cell phones, and TV going on in there. It was like trying to do the sunday crossword with the blender running... Even with the quiet, it still took me another 4 hours to fill out the associated forms. Then, they told me I had to print two forms with two copies each, and one form with 12 copies, and stand on my head, and recite the pledge of allegiance, backwards. And then I still have to come back, to check my submissions again, and if perfect it will take 120 days before her benefits will kick in.
I have half a mind (easy there...that's not an opening) to start a service where if you become disabled that there is a one stop clearinghouse to submit everything. You do your information once, and we take care of everything else... The other half of my mind says I'm crazy to want to get in the middle of this repeatedly. I think the latter one is going to win this one...
So, hopefully I have completed all the forms I need, correctly, and everything is in the pipeline for her. That way I won't have to repeat today's porcupine enema...
How is the girl today?
Sara has been fine today. Getting tied up with all the paperwork b.s. kept me from getting to work today, and then to see her. My boyfriend was such a dear and went to the hospital to hang out with Sara for a while. I hate for her to go a day without seeing a familiar face. I know it is hard enough to be trapped inside herself...I don't want her to get too lonely, too.
I called in to the ICU when Don was there. He put the phone up to her ear and I chit chatted to her about this and that...her cat...todays events...Dr. Immel's cute email...her brothers antics...and how much I miss her. I miss that kids voice. Her chirpy cheery "Hi Mom" when she comes home...even her "grmmssm" when she wakes up in the morning...all grumpy and sleepy.
I'm so gaga about my girl. I can't wait to see her tomorrow after work...
Wednesday, December 5, 2007
The letter
I’m fairly certain that there a number of people who read this blog are wondering why I, being Sara’s father, have been so mute, while others have been posting messages all along.
It isn’t that I’m disconnected from all of this, or that I don’t care about my daughter. Indeed, just the opposite is true. There isn’t a day that goes by that I don’t think about her. During the quiet moments of my life, especially those where I’m driving to and from jobs (I’m kind of like an on-site computer / network / audio-video technician, so I’m frequently on the road), I find myself thinking about Sara and her condition quite a lot – almost to the point of feeling despair and or depression. This is why I must keep myself busy and preoccupied with other things; I might just go crazy otherwise. (Keep in mind that my first son died at the age of 8½ months. While this makes it easier to deal with the cold, hard, medical facts about Sara’s condition, it doesn’t make it any easier to deal with this emotionally.)
I’m also a private person. I don’t want others to be burdened with problems that are my own. However, I do want to help. It occurred to me that, with the benefit concert that is coming up on the 16th of December, there may be something I can do after all.
So, I wrote a letter. It is a letter asking for help from, well, complete strangers. This isn’t for myself (as you will read later), but for Sara and, by extension, Sara’s Mom. As I mention in the letter, I don’t want any credit; all of the attention should be towards Sara. So, why am I posting this here? It occurred to me after I contacted a few places that, if there is a large response, Sara’s Mom and her insurance agent may want to know about it in advance, so they can be prepared. And I do hope there is a large response…
Copies of this letter have been sent to a number of newspapers (San Francisco Chronicle, San Francisco Examiner, Santa Rosa Press Democrat, The Community Voice), television stations (the Bay Area affiliates for ABC, CBS, FOX, and NBC), radio stations (quite a number of ones in San Francisco with local hosts during the morning drive-time, as well as a number in the Rohnert Park / Cotati / Santa Rosa area). I’ve received a few replies back, so far. We’ll have to wait and see what kind of response, if any, develop from this.
So, if you’re reading this, I hope that you, too, will do what you can to help Sara. She can use all the help and support that she can get.
Here’s the letter, with certain parts redacted (which will be explained using curly brackets {}). (And Kristine, if you want to discuss anything about this with me, please call me – I don’t want to have any sort of public discourse about this.)
------------------------------------------------------------------------------------------------
To whom this may concern,
I hope that this doesn’t come across as spam, as it isn’t. This is a plea for help. This is not for me; it is for my daughter and her Mom. I don’t even want any credit for trying to help them.
There will be a number of web site links at the bottom of this e-mail. None of them link to any site that are harmful or questionable. They’re included so you can check on events for yourself; you can either click on them, or type in the URLs yourself, whichever you feel most safe doing.
I am the father of Sara Baker. Just thirteen days after her nineteenth birthday, on October 24, 2007, my daughter was in an automobile accident on US101 near Rohnert Park. Luckily she was the only one involved, and the only one injured.
As a result of a blood clot that formed due to a fractured C1 vertebra, she suffered a massive stroke in the pons area of her brain. Due to this stroke, she now suffers from an extremely rare neurological condition known as “Locked-In Syndrome”. This means that she is completely awake and aware, but has no voluntary control of any part of her body, except for her eyes, which she can open and look up and down (but not side-to-side).
Currently, Sara is in a Kaiser facility in Sacramento, having been transferred to that facility after receiving care at Santa Rosa Memorial Hospital and then UC Davis Medical Center in Sacramento.
As you may be aware, there is a new movie called “The Diving Bell and the Butterfly”, which is about Jean-Dominique Bauby, the former editor-in-chief of the French magazine, Elle, who also suffered from “Locked-In Syndrome”. I have been reading the book on which the movie is based. So far, I find his descriptions of what he went through to be much the same as what my daughter is experiencing.
The reason I am writing to you is that I hope you can find a way to make mention, in some fashion, of a benefit concert that is being organized by Sara’s Mom’s insurance agent. (Sara’s Mom is Kristine, my ex-wife, with whom Sara was living.) The concert is being held in Rohnert Park, at Sonoma Mountain Village, on Sunday, December 16, 2007, 6:00pm to 9:00pm. The person organizing this event is Andre Morrow, and his phone number is 707-794-8100. He is looking for people who can perform, act as sponsors, or for people who can simply attend.
The event is to raise money for the Sara Baker Trust Fund, which is to help Sara and her Mom cope with extraordinary expenses being incurred due to the accident and subsequent stroke. While Sara is being covered by my wife’s (Denise, my second wife) and my health care insurance, there are expenses that insurance simply does not cover.
Both Sara and her Mom were employed part-time, with no insurance when this happened, and therefore have very little money of their own. A single trip to the hospital, for instance, costs Kristine about $40 in gas money. That’s comes to about $1,000 a month, just to visit her daughter. Of course, there are other expenses that Kristine must deal with like rent, food, and those associated with taking care of Sara’s 16 year-old brother (my son), Michael. (And yes, in case you’re curious, I do help as much as I can.)
Before this happened, Sara was going to Santa Rosa Junior College with hopes of eventually becoming a surgeon; she really wanted to help ease people’s suffering. She was working part-time in a veterinary office, helping hurt and injured animals. She was also studying to get her black belt in tae kwon do. It is amazing how someone who is so caring towards others, with such a bright future, can suffer such an awful injury in a blink of an eye.
If you need more information, please feel free to contact me (my name is Tracy Baker) in any of the following ways: {redacted, as I don’t want my personal phone numbers nor e-mail address posted on a public forum}
Here are the web site links so you can check things out for yourself.
{redacted, as all the links I’ve given are either found here already, or on the Sara’s Courage website}
It isn’t that I’m disconnected from all of this, or that I don’t care about my daughter. Indeed, just the opposite is true. There isn’t a day that goes by that I don’t think about her. During the quiet moments of my life, especially those where I’m driving to and from jobs (I’m kind of like an on-site computer / network / audio-video technician, so I’m frequently on the road), I find myself thinking about Sara and her condition quite a lot – almost to the point of feeling despair and or depression. This is why I must keep myself busy and preoccupied with other things; I might just go crazy otherwise. (Keep in mind that my first son died at the age of 8½ months. While this makes it easier to deal with the cold, hard, medical facts about Sara’s condition, it doesn’t make it any easier to deal with this emotionally.)
I’m also a private person. I don’t want others to be burdened with problems that are my own. However, I do want to help. It occurred to me that, with the benefit concert that is coming up on the 16th of December, there may be something I can do after all.
So, I wrote a letter. It is a letter asking for help from, well, complete strangers. This isn’t for myself (as you will read later), but for Sara and, by extension, Sara’s Mom. As I mention in the letter, I don’t want any credit; all of the attention should be towards Sara. So, why am I posting this here? It occurred to me after I contacted a few places that, if there is a large response, Sara’s Mom and her insurance agent may want to know about it in advance, so they can be prepared. And I do hope there is a large response…
Copies of this letter have been sent to a number of newspapers (San Francisco Chronicle, San Francisco Examiner, Santa Rosa Press Democrat, The Community Voice), television stations (the Bay Area affiliates for ABC, CBS, FOX, and NBC), radio stations (quite a number of ones in San Francisco with local hosts during the morning drive-time, as well as a number in the Rohnert Park / Cotati / Santa Rosa area). I’ve received a few replies back, so far. We’ll have to wait and see what kind of response, if any, develop from this.
So, if you’re reading this, I hope that you, too, will do what you can to help Sara. She can use all the help and support that she can get.
Here’s the letter, with certain parts redacted (which will be explained using curly brackets {}). (And Kristine, if you want to discuss anything about this with me, please call me – I don’t want to have any sort of public discourse about this.)
------------------------------------------------------------------------------------------------
To whom this may concern,
I hope that this doesn’t come across as spam, as it isn’t. This is a plea for help. This is not for me; it is for my daughter and her Mom. I don’t even want any credit for trying to help them.
There will be a number of web site links at the bottom of this e-mail. None of them link to any site that are harmful or questionable. They’re included so you can check on events for yourself; you can either click on them, or type in the URLs yourself, whichever you feel most safe doing.
I am the father of Sara Baker. Just thirteen days after her nineteenth birthday, on October 24, 2007, my daughter was in an automobile accident on US101 near Rohnert Park. Luckily she was the only one involved, and the only one injured.
As a result of a blood clot that formed due to a fractured C1 vertebra, she suffered a massive stroke in the pons area of her brain. Due to this stroke, she now suffers from an extremely rare neurological condition known as “Locked-In Syndrome”. This means that she is completely awake and aware, but has no voluntary control of any part of her body, except for her eyes, which she can open and look up and down (but not side-to-side).
Currently, Sara is in a Kaiser facility in Sacramento, having been transferred to that facility after receiving care at Santa Rosa Memorial Hospital and then UC Davis Medical Center in Sacramento.
As you may be aware, there is a new movie called “The Diving Bell and the Butterfly”, which is about Jean-Dominique Bauby, the former editor-in-chief of the French magazine, Elle, who also suffered from “Locked-In Syndrome”. I have been reading the book on which the movie is based. So far, I find his descriptions of what he went through to be much the same as what my daughter is experiencing.
The reason I am writing to you is that I hope you can find a way to make mention, in some fashion, of a benefit concert that is being organized by Sara’s Mom’s insurance agent. (Sara’s Mom is Kristine, my ex-wife, with whom Sara was living.) The concert is being held in Rohnert Park, at Sonoma Mountain Village, on Sunday, December 16, 2007, 6:00pm to 9:00pm. The person organizing this event is Andre Morrow, and his phone number is 707-794-8100. He is looking for people who can perform, act as sponsors, or for people who can simply attend.
The event is to raise money for the Sara Baker Trust Fund, which is to help Sara and her Mom cope with extraordinary expenses being incurred due to the accident and subsequent stroke. While Sara is being covered by my wife’s (Denise, my second wife) and my health care insurance, there are expenses that insurance simply does not cover.
Both Sara and her Mom were employed part-time, with no insurance when this happened, and therefore have very little money of their own. A single trip to the hospital, for instance, costs Kristine about $40 in gas money. That’s comes to about $1,000 a month, just to visit her daughter. Of course, there are other expenses that Kristine must deal with like rent, food, and those associated with taking care of Sara’s 16 year-old brother (my son), Michael. (And yes, in case you’re curious, I do help as much as I can.)
Before this happened, Sara was going to Santa Rosa Junior College with hopes of eventually becoming a surgeon; she really wanted to help ease people’s suffering. She was working part-time in a veterinary office, helping hurt and injured animals. She was also studying to get her black belt in tae kwon do. It is amazing how someone who is so caring towards others, with such a bright future, can suffer such an awful injury in a blink of an eye.
If you need more information, please feel free to contact me (my name is Tracy Baker) in any of the following ways: {redacted, as I don’t want my personal phone numbers nor e-mail address posted on a public forum}
Here are the web site links so you can check things out for yourself.
{redacted, as all the links I’ve given are either found here already, or on the Sara’s Courage website}
Tuesday, December 4, 2007
Getting slowly to work...
Sara is flat beat today. She had quite the day.
She spiked a fever earlier - out of nowhere. Well, being overly careful about infection, we went to alert. By the time I got to Sacramento she was down to 99 something. Probably another neurogenic fever. They did put her moving to another facility on hold, however...
She had two trips in the cardiac chair, one and a half hours each. The second one she was so tired she slept in the chair.
Had physical therapy this morning, and a second session to show me how to work with her in the late afternoon. The therapist showed me the difference between a reaction, tone and a purposeful movement. We went over several different places of different ones. She explained to Sara that she has to work anything she can when she can. They evaluated her and she's not ready for PT yet, but will evaluate her weekly until she is. The therapist encouraged me to teach other family members how to flex her and for me to keep up with working with any movement she has.
She had occupational therapy come evaluate her. I didn't get to talk to them. But they are working on her hand.
And this evening the speech language pathologist came in because he heard I was there. He explained to Sara and I that he is looking for a repeatable physical movement. He tried different facial movements, looking for something other than the eyelids, to work with. He told her how a communication system works and what she needs to be able to do before they can tailor one to her needs. He also said that his job is to evaluate those movements, and work with her to re-learn to swallow. Once she can repeat any small movement he can call in a specialist to help design a trigger for her.
So, it looks like it is still early for her. That's ok. She is doing everything she can, and working very hard already. She is already doing things they didn't think she could. But, now she has to figure out how to repeat a movement on command over and over. When she's ready and able is soon enough. I asked her and she is glad to finally getting some help doing something to help herself...
I just love seeing her smile...even if it is all crooked and weird looking right now. The fact that she smiles at all is just amazing..
She spiked a fever earlier - out of nowhere. Well, being overly careful about infection, we went to alert. By the time I got to Sacramento she was down to 99 something. Probably another neurogenic fever. They did put her moving to another facility on hold, however...
She had two trips in the cardiac chair, one and a half hours each. The second one she was so tired she slept in the chair.
Had physical therapy this morning, and a second session to show me how to work with her in the late afternoon. The therapist showed me the difference between a reaction, tone and a purposeful movement. We went over several different places of different ones. She explained to Sara that she has to work anything she can when she can. They evaluated her and she's not ready for PT yet, but will evaluate her weekly until she is. The therapist encouraged me to teach other family members how to flex her and for me to keep up with working with any movement she has.
She had occupational therapy come evaluate her. I didn't get to talk to them. But they are working on her hand.
And this evening the speech language pathologist came in because he heard I was there. He explained to Sara and I that he is looking for a repeatable physical movement. He tried different facial movements, looking for something other than the eyelids, to work with. He told her how a communication system works and what she needs to be able to do before they can tailor one to her needs. He also said that his job is to evaluate those movements, and work with her to re-learn to swallow. Once she can repeat any small movement he can call in a specialist to help design a trigger for her.
So, it looks like it is still early for her. That's ok. She is doing everything she can, and working very hard already. She is already doing things they didn't think she could. But, now she has to figure out how to repeat a movement on command over and over. When she's ready and able is soon enough. I asked her and she is glad to finally getting some help doing something to help herself...
I just love seeing her smile...even if it is all crooked and weird looking right now. The fact that she smiles at all is just amazing..
Visitors
Anybody who would like to visit Sara - that she already knows - can contact me at kbconsults@gmail.com if you would like to setup going to see her.
I know there are still some of her friends that haven't had a chance to see her. And I know that there other people important to her she'd like to see, too. (Especially Dr. Immel!)
We just ask that any visits be coordinated via Mom so she doesn't get overwhelmed or interfere with any therapy. Depending on when we schedule a visit, you may even be able to catch a ride up and back with me.
I know there are still some of her friends that haven't had a chance to see her. And I know that there other people important to her she'd like to see, too. (Especially Dr. Immel!)
We just ask that any visits be coordinated via Mom so she doesn't get overwhelmed or interfere with any therapy. Depending on when we schedule a visit, you may even be able to catch a ride up and back with me.
Sleepy monday
Sara was really tired today. The extended time in the cardiac chair and the visits this weekend seemed to wipe her out a bit. She only did an hour in the chair today and rested the remainder. The nurse made it sound like a little bit of failure, but I told her that Sara resting was Great!. I still think the nursing staff thinks that I am looking for some miracle, some magical intervention to bring unheard of recovery. I'm not. I understand what this is, and I am happy enough to let her rest when she needs it.
That being said...I was very happy that she tolerated 3 hours upright yesterday. That is quite an undertaking. She's been horizontal for only but a few hours in a month and a half. And don't even get me started about the hand squeeze...
No..when my baby girl needs to rest I recognize it is from working very hard. It always has been. I can only imagine how hard she is working now...but i have seen from where she started on the day of her stroke, and am amazed. Nothing major or miraculous by medical standards, but plenty of stuff they said she couldn't do, and would never be able to.
On another front...I started packing up her room tonight. I have to do it. She's never going to come home to this apartment. And everytime I walk past her room, and see it so hollow from her absence, it makes me ache. It has become the hardest thing I do each day, walk past her room. And, it is unavoidable since it is right next to mine. I find myself standing in the doorway, looking at her world and knowing it will never be the same. I have absolute faith in Sara, but it makes me so sad to see her room as if she just left for work and will be home after seeing Daniel after school...
So, I started packing up her room. I took pictures of how everything was setup. I know how much she likes to unpack and arrange her room. So, I am going to take the stuff down from the walls, and set it aside so we can decorate her next hospital room. And when she is able to finally come home, she can direct us where to put everything else to her liking. I won't pull it out of the boxes and set it up for her in advance. She loves to think about where to put things, and to decorate. I couldn't mimic her style...and she's let me know that many times before.
Daniel was here while I got started with it. He understands where I'm coming from and seems ok with it, too. He watched me carefully place her stuff in plastic boxes so nothing gets dirty or damaged. And he took a couple of her more private things for safe keeping close to him. I thought it was ok, but will also let Sara know. Check with her to make sure its ok...
I hope her sleepy day does her well, and she also rests well tonight. I know the staff now looks forward to working with her more. They are glad to see her participation, and it certainly helps her to now have some tasks to do. (although i've been giving her tasks all along...she has to do them for staff)
It's raining outside. Has been off and on since last night. We love rainy nights. I would seldom let her drive in the rain and we'd stay home and frequently end up talking. The house is way too quiet without her here. It makes the rain sound so much louder...
That being said...I was very happy that she tolerated 3 hours upright yesterday. That is quite an undertaking. She's been horizontal for only but a few hours in a month and a half. And don't even get me started about the hand squeeze...
No..when my baby girl needs to rest I recognize it is from working very hard. It always has been. I can only imagine how hard she is working now...but i have seen from where she started on the day of her stroke, and am amazed. Nothing major or miraculous by medical standards, but plenty of stuff they said she couldn't do, and would never be able to.
On another front...I started packing up her room tonight. I have to do it. She's never going to come home to this apartment. And everytime I walk past her room, and see it so hollow from her absence, it makes me ache. It has become the hardest thing I do each day, walk past her room. And, it is unavoidable since it is right next to mine. I find myself standing in the doorway, looking at her world and knowing it will never be the same. I have absolute faith in Sara, but it makes me so sad to see her room as if she just left for work and will be home after seeing Daniel after school...
So, I started packing up her room. I took pictures of how everything was setup. I know how much she likes to unpack and arrange her room. So, I am going to take the stuff down from the walls, and set it aside so we can decorate her next hospital room. And when she is able to finally come home, she can direct us where to put everything else to her liking. I won't pull it out of the boxes and set it up for her in advance. She loves to think about where to put things, and to decorate. I couldn't mimic her style...and she's let me know that many times before.
Daniel was here while I got started with it. He understands where I'm coming from and seems ok with it, too. He watched me carefully place her stuff in plastic boxes so nothing gets dirty or damaged. And he took a couple of her more private things for safe keeping close to him. I thought it was ok, but will also let Sara know. Check with her to make sure its ok...
I hope her sleepy day does her well, and she also rests well tonight. I know the staff now looks forward to working with her more. They are glad to see her participation, and it certainly helps her to now have some tasks to do. (although i've been giving her tasks all along...she has to do them for staff)
It's raining outside. Has been off and on since last night. We love rainy nights. I would seldom let her drive in the rain and we'd stay home and frequently end up talking. The house is way too quiet without her here. It makes the rain sound so much louder...
Sunday, December 2, 2007
Dad time
I meet with Michelle Gachet at my house at 10 this morning. As Daniel and Kristina stated, She is a reporter for the Oak leaf. That is the paper for the Santa Rosa JC. Michelle had gotten the assignment from her teacher originally, but she asked if she could do a follow up on the story. Anyway I drove us up there and we talked about Sara and what she was like growing up. She wanted to know what Sara wanted to be and the usual stuff. I did my best to answer all her questions.
When we got there, The nursing staff was giving Sara a bath and so we waited outside until they were done. The nurse informed me that she had been in the cardiac chair for 3 hours. New record for the kid. It takes a lot out of her and she was so tired by the time I was able to see her. When I held Sara’s Hand. She tried to close her fingers. She couldn’t actually close them, but I could feel the tension in her fingers and a slight tightening as she made the attempt. I just about jumped out of my skin. I asked her to do it again and she did. It was weaker than the first attempt, But she did it. The nurse and I got her settled and I talked with her for a bit. I didn’t introduce Sara to Michelle just yet. I wanted her to get some rest. You can tell when Sara gets real tired, Her eye will start to drift as she focuses on you. So I turned out the lights and let her rest. She was asleep a little over an hour when Daniel and Dave arrived.
I let them know how she was doing and I knew Daniel wanted some time with her, so Michelle and I grabbed some coffee and talked some more. After Daniel left, I Spent a little one on one time with Sara. It was late and the nurse informed me that they would be putting her in her resting position soon. Well, once we had her in comfortable position, I introduced her to Michelle. I think Michelle felt a little awkward, but she talked with Sara for a bit. She was really starting to fade out to sleep at this point. I turned out the lights put on some quite music and got her room as quite as I could get it. Then I held her hand and told her I loved her and watched he drift off to sleep.
All in all it was a great day for her. She closed her hand, (a little, but it’s a start) and did 3 hours in the chair. And the best part was I got to see those Beautiful blue eyes.
Mike
When we got there, The nursing staff was giving Sara a bath and so we waited outside until they were done. The nurse informed me that she had been in the cardiac chair for 3 hours. New record for the kid. It takes a lot out of her and she was so tired by the time I was able to see her. When I held Sara’s Hand. She tried to close her fingers. She couldn’t actually close them, but I could feel the tension in her fingers and a slight tightening as she made the attempt. I just about jumped out of my skin. I asked her to do it again and she did. It was weaker than the first attempt, But she did it. The nurse and I got her settled and I talked with her for a bit. I didn’t introduce Sara to Michelle just yet. I wanted her to get some rest. You can tell when Sara gets real tired, Her eye will start to drift as she focuses on you. So I turned out the lights and let her rest. She was asleep a little over an hour when Daniel and Dave arrived.
I let them know how she was doing and I knew Daniel wanted some time with her, so Michelle and I grabbed some coffee and talked some more. After Daniel left, I Spent a little one on one time with Sara. It was late and the nurse informed me that they would be putting her in her resting position soon. Well, once we had her in comfortable position, I introduced her to Michelle. I think Michelle felt a little awkward, but she talked with Sara for a bit. She was really starting to fade out to sleep at this point. I turned out the lights put on some quite music and got her room as quite as I could get it. Then I held her hand and told her I loved her and watched he drift off to sleep.
All in all it was a great day for her. She closed her hand, (a little, but it’s a start) and did 3 hours in the chair. And the best part was I got to see those Beautiful blue eyes.
Mike
A visit from the press
A reporter from The Oak Leaf, the SRJC paper, hung out with Mike today while he visited Sara. I don't remember her name, but she asked me questions as well. I was only able to spend a short time at the hospital today. I've been sick the last week and wasn't up for driving so my Dad offerd to do it. Unfortunatly that gave me a time limit as he had some work he needed to get done this evening. But the time I did get to see Sara was good. I finally finished the chapter of the Hobbit we were on. I also sung along to Bohemian Rhapsody for her. And although she didn't smile for me, she was moving her head slightly. Also, Mike said that at one point she was able to move her fingers on her right hand, although apparently she was quite exhausted from that effort.
Daniel H.
Kristina Comment: The reporter was Michelle Gachet. Her original story is in the "Sara in the News" section. Sara was exhausted due to being in the cardiac chair for 3 hours today. That is longer than she has previously. Go Sara!
Daniel H.
Kristina Comment: The reporter was Michelle Gachet. Her original story is in the "Sara in the News" section. Sara was exhausted due to being in the cardiac chair for 3 hours today. That is longer than she has previously. Go Sara!
Saturday, December 1, 2007
November to a close...
I spent the day with Sara. She was so awake and alert. Sat up in the cardiac chair for several hours. Eyes open, bright. She was watching TV when I got there. Then she and I watched together for a little while. I told her about what her cat had done...and she smiled at it.
Her nurse told me that she's been a lot more engaged when awake and is resting well when she gets tired. I am glad to hear it. It is nice that even nurses that see her on a daily basis can see a change towards improvement.
The skin on her hands is really starting to break down. The tape from the pulse oximeter sensors wreaks havoc on her fingers. I asked Nurse-Grace if we could change her from a taped sensor to a clip sensor. I pulled off her current taped sensor and showed her nurse how her skin is becoming really damaged. She agreed. While she changed out the sensor, I carefully washed Sara's hands, scrubbed off any dead skin down to the fresh pink skin, gave her a manicure and really moisturized her skin well. She'll need that at least daily (moisturizer). I was able to sneak a peek at the rest of her skin (most of it) when they were moving her into the bed. Looks real good...no red spots, breakdown, sores, etc. I would like to give her a bath one of these days and use the exfoliating gloves gently. I bet that would feel good for her...
I went into her room this evening. I sat in her chair, facing into her room, for the longest time. I sat looking at the walls, with the careful groupings of pictures, posters, momentos. I used to think it was random how she put it up, but tonight I took the time to look for the relation. Her room tells a story...of her...her interests...her loves...
I'm going to take some of the stuff down, and put it in a box for her next hospital room. She will be there for at least 100 days, so I'll want to make it as pleasant for her as possible.
I requested that her next facility be Alta Bates in Berkeley. Dr. Neurology agrees that is an outstanding facility and has a lot of services that she will really benefit from.
Her nurse told me that she's been a lot more engaged when awake and is resting well when she gets tired. I am glad to hear it. It is nice that even nurses that see her on a daily basis can see a change towards improvement.
The skin on her hands is really starting to break down. The tape from the pulse oximeter sensors wreaks havoc on her fingers. I asked Nurse-Grace if we could change her from a taped sensor to a clip sensor. I pulled off her current taped sensor and showed her nurse how her skin is becoming really damaged. She agreed. While she changed out the sensor, I carefully washed Sara's hands, scrubbed off any dead skin down to the fresh pink skin, gave her a manicure and really moisturized her skin well. She'll need that at least daily (moisturizer). I was able to sneak a peek at the rest of her skin (most of it) when they were moving her into the bed. Looks real good...no red spots, breakdown, sores, etc. I would like to give her a bath one of these days and use the exfoliating gloves gently. I bet that would feel good for her...
I went into her room this evening. I sat in her chair, facing into her room, for the longest time. I sat looking at the walls, with the careful groupings of pictures, posters, momentos. I used to think it was random how she put it up, but tonight I took the time to look for the relation. Her room tells a story...of her...her interests...her loves...
I'm going to take some of the stuff down, and put it in a box for her next hospital room. She will be there for at least 100 days, so I'll want to make it as pleasant for her as possible.
I requested that her next facility be Alta Bates in Berkeley. Dr. Neurology agrees that is an outstanding facility and has a lot of services that she will really benefit from.
Thursday, November 29, 2007
Thursday update...
Sara did well today. She was awake and alert. She participated with the speech therapist and went through physical therapy and occupational therapy evaluations. They are all looking for the same thing: what is Sara's starting point.
When working with the speech therapist, she was able to work out with them a set "yes", "no", "i don't know", and "i need attention" signals. The last one is just for the nurses, so she can indicate when something hurts, etc.
I am glad she finally engaged one of the therapists. I say finally...jeez mom...give the girl a chance here... They (physical medicine and rehab) mentioned in our meeting that any time they had tried to engage her that she did not participate. I suggested that maybe they start telling the girl WHY they are there, and maybe she'll perk up - instead of assuming you are another person in to poke on her...
Also...I called the sub-acute care facility in Healdsburg. Found out that they may not continue as a Kaiser contracted facility. Something about differences in patient care/problems. Hey...that was enough for me to hear. I also checked the facility out on the web and it is primarily a nursing home. Nope...
I got all excited about having her closer and didn't look at where the best AND closest place would be for her...
So, I looked at the list again...then I saw it...the perfect next step for her - Alta Bates Medical Center in Berkeley. Although I really want her closer, an hour closer than Sacramento it is. AND, it is one of the best facilities anywhere. They are a regional rehabilitation center, regional stroke center. And I have been in that hospital for classes and it is very nice.
Mind you...I am VERY HAPPY with the care she has gotten at Kaiser. Dr. Neurosurgery and Dr. Neurology have been outstanding to her and her family. The nursing is so different, so attentive and relaxed and they really try to build a nurturing rapport with the patient. We are very fortunate to have been transferred to their program from UC Davis and she has done very well there. But, that is an ICU bed and Sara doesn't need that level of care anymore. (WooHoo!!!) I know from that scary night last month, having a very sick child and no ICU bed to take her was a terrifying experience. If Davis had not accepted her she would have died that morning... So, she requires sub-acute on her way to rehab...and someone else may need the outstanding care of the Kaiser Neurosurgery ICU. Nobody there reads the blog, so you know I am not just fluffing somebody's scrubs...
The UCDavis nurses though are awesome, too. They helped hold together not only Sara, but me, too. And they had to care for and look out for her, while not getting into that whole AD political mess that stirred up... They watched out for her on the very rare occasion that I wasn't there for a few hours those first few weeks. Just very different "vibe" to the different NSICUs.
I worked all day today. Although I felt pretty guilty not going up there, it felt good to be truly productive and get some things fixed. That's what i've always done..fix things. Strange irony that I can't fix my own precious daughter... But i've been taking on more work hours and I know Michael feels better seeing me do so.
Her cat, Dusty, expressed his extreme displeasure with me late lastnight. Michael theorizes that the cat thinks I am keeping him from Sara or Sara from him. The last time he saw her I took him up to the room, and i'm sure he's smelled her on me since then. Anyway, good thing he's an old cat missing his girl or he would have been an airborn cat missing terra firma...(I wouldn't really throw the cat...beyond a game we call "fly kitty"*...but i'd sure tell him I would...
*fly kitty: ask cat if he wants to "fly kitty". he'll mrow and walk over if he does. pick the cat up, about 3 feet away from the couch or a bed, say "fly kitty" and launch him into a gentle arch onto soft device. repeat until cat walks off... (sara started this game with him when she was 5 years old and he was about 3 months)
When working with the speech therapist, she was able to work out with them a set "yes", "no", "i don't know", and "i need attention" signals. The last one is just for the nurses, so she can indicate when something hurts, etc.
I am glad she finally engaged one of the therapists. I say finally...jeez mom...give the girl a chance here... They (physical medicine and rehab) mentioned in our meeting that any time they had tried to engage her that she did not participate. I suggested that maybe they start telling the girl WHY they are there, and maybe she'll perk up - instead of assuming you are another person in to poke on her...
Also...I called the sub-acute care facility in Healdsburg. Found out that they may not continue as a Kaiser contracted facility. Something about differences in patient care/problems. Hey...that was enough for me to hear. I also checked the facility out on the web and it is primarily a nursing home. Nope...
I got all excited about having her closer and didn't look at where the best AND closest place would be for her...
So, I looked at the list again...then I saw it...the perfect next step for her - Alta Bates Medical Center in Berkeley. Although I really want her closer, an hour closer than Sacramento it is. AND, it is one of the best facilities anywhere. They are a regional rehabilitation center, regional stroke center. And I have been in that hospital for classes and it is very nice.
Mind you...I am VERY HAPPY with the care she has gotten at Kaiser. Dr. Neurosurgery and Dr. Neurology have been outstanding to her and her family. The nursing is so different, so attentive and relaxed and they really try to build a nurturing rapport with the patient. We are very fortunate to have been transferred to their program from UC Davis and she has done very well there. But, that is an ICU bed and Sara doesn't need that level of care anymore. (WooHoo!!!) I know from that scary night last month, having a very sick child and no ICU bed to take her was a terrifying experience. If Davis had not accepted her she would have died that morning... So, she requires sub-acute on her way to rehab...and someone else may need the outstanding care of the Kaiser Neurosurgery ICU. Nobody there reads the blog, so you know I am not just fluffing somebody's scrubs...
The UCDavis nurses though are awesome, too. They helped hold together not only Sara, but me, too. And they had to care for and look out for her, while not getting into that whole AD political mess that stirred up... They watched out for her on the very rare occasion that I wasn't there for a few hours those first few weeks. Just very different "vibe" to the different NSICUs.
I worked all day today. Although I felt pretty guilty not going up there, it felt good to be truly productive and get some things fixed. That's what i've always done..fix things. Strange irony that I can't fix my own precious daughter... But i've been taking on more work hours and I know Michael feels better seeing me do so.
Her cat, Dusty, expressed his extreme displeasure with me late lastnight. Michael theorizes that the cat thinks I am keeping him from Sara or Sara from him. The last time he saw her I took him up to the room, and i'm sure he's smelled her on me since then. Anyway, good thing he's an old cat missing his girl or he would have been an airborn cat missing terra firma...(I wouldn't really throw the cat...beyond a game we call "fly kitty"*...but i'd sure tell him I would...
*fly kitty: ask cat if he wants to "fly kitty". he'll mrow and walk over if he does. pick the cat up, about 3 feet away from the couch or a bed, say "fly kitty" and launch him into a gentle arch onto soft device. repeat until cat walks off... (sara started this game with him when she was 5 years old and he was about 3 months)
Wednesday Update
Sara had friends go up to the hospital yesterday. Victoria, Dave and Mike Jeffries went up and spent a little time with her.
Yesterday she was a bit tired. Didn't want to deal with nurses/therapists/etc. Her nurse did tell me that she stretched in the morning when she woke up and moved both legs and her left arm, however slightly.
She basically refused to work with the speech therapists yesterday. I asked the nurse if anybody told her what was going on (as in, Hey Sara, you get to start some therapy to help you recover from this)...she didn't know. Hmm...telling Sara what is going on might be a good way to get all this started...
I ran errands yesterday afternoon regarding her accident. Picked up the accident report, some records, went to go photograph the car (but they had already sold and crushed it for scrap metal - good old solid metal american car...). I went to the accident site and took some pictures. I spent a lot of time there, actually. I found myself sitting in the spot I figured she'd been trapped at...for a long time...then for no reason I started picking up the glass from her windows. I think i'll make something from it. it seems a shame to have the grass take over and heal the spot she was at while she is still in the hospital... I guess life, and weeds, really do go on...
Other than that...not much on the hospital front. She rested well last night. I checked in this morning and she is communicating and very engaged.
Yesterday she was a bit tired. Didn't want to deal with nurses/therapists/etc. Her nurse did tell me that she stretched in the morning when she woke up and moved both legs and her left arm, however slightly.
She basically refused to work with the speech therapists yesterday. I asked the nurse if anybody told her what was going on (as in, Hey Sara, you get to start some therapy to help you recover from this)...she didn't know. Hmm...telling Sara what is going on might be a good way to get all this started...
I ran errands yesterday afternoon regarding her accident. Picked up the accident report, some records, went to go photograph the car (but they had already sold and crushed it for scrap metal - good old solid metal american car...). I went to the accident site and took some pictures. I spent a lot of time there, actually. I found myself sitting in the spot I figured she'd been trapped at...for a long time...then for no reason I started picking up the glass from her windows. I think i'll make something from it. it seems a shame to have the grass take over and heal the spot she was at while she is still in the hospital... I guess life, and weeds, really do go on...
Other than that...not much on the hospital front. She rested well last night. I checked in this morning and she is communicating and very engaged.
Tuesday, November 27, 2007
...adjustments...
Just so you know...the living situation will stay the same. Sara is not going to be in any position to come home any time soon, so we'll hold tight and give her time to heal before making any changes on the home front.
Nanci asked me last night if Sara couldn't come home soon would I want to move...I thought about it and it was an easy no... I just got a little ahead of myself.
Anyway - yes, her Neurologist gave the go ahead to start looking for a sub-acute facility for her. Mainly because she is ventilator dependent still and needs a facility and staff that can adequately handle that. He also made an adjustment to her neuro checks. Instead of every hour 24x7, they are every 2hrs during the day shift, and every 4 hrs at night. She'll be able to start getting some rest.
Also, he is going to put her on Prozac. Before getting all up in arms about it...i will offer an explanation. It helps in cases like these two ways: 1) an anti-depressant certainly can't hurt when someone has had their entire life turned upside down and is now quadraplegic, and 2) it helps head injury patients be more engaged/awake... And, if they are going to start getting her to communicate with them better, and benefit from ANY therapy, she has to be more of both...
Physical medicine is going to start therapy with her. Working her joints, especially her right hand and jaw, as those are tight. The nursing staff (starting with Nurse-Carlo at UCD) have been moving and flexing her joints a couple of times a day. The collar on her neck has prevented any jaw action. Dr. Neuro gave the ok to pull the front off the collar when she is flat, and work her jaw to open her mouth.
The collar - will be on for at least another 4 weeks. Although the break in C1 is "fairly minor" according to her doc, the ligaments and soft structures were hammered pretty hard and have to have a chance to heal. They will test remove it in another 4 weeks, and xray for position. If her vertabrae are allowed to move too much, they'll put the collar back on (as the ligaments are too loose and still need to heal.)
I told Sara that we needed her to communicate easily with everyone, not just me. She and I already have a close bond, and a lot of unspoken communication, but hospital staff need to feel like they are communicating well with her. So, to that end, she and I worked together this afternoon and blinks are much easier for her, quicker, don't fatique her as much, so we are changing to that. blink once for yes...nothing for no (for now). When she couldn't blink, or keep her eyes open at all, the only way was to hold open her lids and have her move eyes up and down. She's progressed to the point that her eyes are open most of the time now when she's awake. Hopefully the staff will find this easier and work with her more.
and...she smiled...I couldn't believe it...I said something really funny...and she smiled at me... I don't care what anybody says...that was worth every sleepless night since this started...my baby girl smiled at me...
(then I got all goo goo on her and she rolled her eyes...see? some things never change...)
Nanci asked me last night if Sara couldn't come home soon would I want to move...I thought about it and it was an easy no... I just got a little ahead of myself.
Anyway - yes, her Neurologist gave the go ahead to start looking for a sub-acute facility for her. Mainly because she is ventilator dependent still and needs a facility and staff that can adequately handle that. He also made an adjustment to her neuro checks. Instead of every hour 24x7, they are every 2hrs during the day shift, and every 4 hrs at night. She'll be able to start getting some rest.
Also, he is going to put her on Prozac. Before getting all up in arms about it...i will offer an explanation. It helps in cases like these two ways: 1) an anti-depressant certainly can't hurt when someone has had their entire life turned upside down and is now quadraplegic, and 2) it helps head injury patients be more engaged/awake... And, if they are going to start getting her to communicate with them better, and benefit from ANY therapy, she has to be more of both...
Physical medicine is going to start therapy with her. Working her joints, especially her right hand and jaw, as those are tight. The nursing staff (starting with Nurse-Carlo at UCD) have been moving and flexing her joints a couple of times a day. The collar on her neck has prevented any jaw action. Dr. Neuro gave the ok to pull the front off the collar when she is flat, and work her jaw to open her mouth.
The collar - will be on for at least another 4 weeks. Although the break in C1 is "fairly minor" according to her doc, the ligaments and soft structures were hammered pretty hard and have to have a chance to heal. They will test remove it in another 4 weeks, and xray for position. If her vertabrae are allowed to move too much, they'll put the collar back on (as the ligaments are too loose and still need to heal.)
I told Sara that we needed her to communicate easily with everyone, not just me. She and I already have a close bond, and a lot of unspoken communication, but hospital staff need to feel like they are communicating well with her. So, to that end, she and I worked together this afternoon and blinks are much easier for her, quicker, don't fatique her as much, so we are changing to that. blink once for yes...nothing for no (for now). When she couldn't blink, or keep her eyes open at all, the only way was to hold open her lids and have her move eyes up and down. She's progressed to the point that her eyes are open most of the time now when she's awake. Hopefully the staff will find this easier and work with her more.
and...she smiled...I couldn't believe it...I said something really funny...and she smiled at me... I don't care what anybody says...that was worth every sleepless night since this started...my baby girl smiled at me...
(then I got all goo goo on her and she rolled her eyes...see? some things never change...)
Went to the hospital today.
As some of you may know, I've not been at the hospital to see Sara in a while. Well, I decided not to go to school today so I could go visit her with mom. I've not really been talking a whole lot but it has been nice to just be near her. Mom went to go to a meeting with a few people to discuss the plan of action and I fell asleep in her bed next to her. The nap was nice and despite the fact that the fan kept blowing cold air on my back I slept pretty well (for about an hour). Mom came back right after my nap and we're talking about possibly moving her to Headsburg (Back to Sonoma County, which is a lot easier to get to than the two hour drive to Sacramento), which would be nice. We're also still trying to figure out our living situation. I don't mind moving to a new house too much, however I'd only really like to move once and I've told Mom this. Hopefully she'll take this into account, but she doesn't have to. I just hope that whatever we do is the right decision for Sara, and for us as a family.
Well, we just (and I mean before I finished writing this post even) decided that blinking is easier for Sara, so instead of moving her eyes, she'll blink once for yes and do nothing for no. This is easier for her because blinking is easier in general (this I'm not sure why it is, but it is). This is good, so with any luck she'll be able to communicate more.
I just loooked up Healdsburg on Google Maps -- It's about 20mi from our house. If she does get to go to the subacute care center there, it'll be much, much better for all of us, so we can visit her, and she'll be home in sonoma county.
I really hope, for everybody's sake, that she can make a full recovery and get back to living her life. She's an amazing person, and I really hope that the world can get to know her as the person she once was.
Well, we just (and I mean before I finished writing this post even) decided that blinking is easier for Sara, so instead of moving her eyes, she'll blink once for yes and do nothing for no. This is easier for her because blinking is easier in general (this I'm not sure why it is, but it is). This is good, so with any luck she'll be able to communicate more.
I just loooked up Healdsburg on Google Maps -- It's about 20mi from our house. If she does get to go to the subacute care center there, it'll be much, much better for all of us, so we can visit her, and she'll be home in sonoma county.
I really hope, for everybody's sake, that she can make a full recovery and get back to living her life. She's an amazing person, and I really hope that the world can get to know her as the person she once was.
Monday, November 26, 2007
Resting day...
Sara had a very eventful weekend. I thought it might be good to give her a nice quiet day to rest.
She did. I called both the day and night shift nurses to check in and they both told me that she's doing very well. She was in the cardiac chair today and tolerated it well. Her oral secretions are down a bit, which is good. No fever.
She's in bed now watching TV. I told her that her brother and I will be up there tomorrow.
Tomorrow I have a meeting scheduled with her doctors, the social workers, physical medicine & rehab and a discharge planner. We are going to discuss planning for her next few steps and make sure we're all on the same page for her care. Initial indication, since she is still ventilator dependent, is that she needs to go to a sub-acute care facility. It is one step above nursing home, one below hospital, but with no rehabilitation. But, before I get ahead of myself, that was just in discussion with social work with what they thought the next step may be.
I went to SRJC and got her student records. I also went to Santa Rosa Memorial and ordered a copy of her medical records. I've got quite the library of Sara-info growing. Her medical record from UC Davis is going to be huge...
I went by Pecoraro's Martial Arts on the way home from work today. I had not been in their new facility. Very nice. The Pecoraro family (John, Adam and Carol) are such amazing people. They've helped me with Michael before he went to Hanna (gave him a responsibility talk and held him to it), mentored Sara in life and martial arts for years, watched our family grow and change. And now they, and the entire Pecoraro's family (instructors, students), are standing in support of Sara. They've asked me to communicate to Sara their collective love, support and belief in her - I will do that tomorrow when I see her. They have something very special planned to honor Sara. I will let you all know about it after the fact, as it is something very personal for her.
I went and looked at a 4br single story house today. Not going to happen. The place was nice enough but it wouldn't fit. Basically I have to decide if Mike and I stay here until she is nearing being able to come home or visit, or move to a single story place and gradually setup for her, or move to a two bedroom place and save some money until she can come home or visit and then move. I guess the planning tomorrow will tell me more to go with. Its hard not knowing what to do, or what not to do.
I spent some time this evening looking at communications systems/software for Sara. It is the worst thing not being able to "talk" to people at all. That is what makes her saddest, I am sure. I talked to Kaiser today about what we could do about that and basically I have to apply for SSI and MediCAL, etc. for her and see what they will pay for. Meanwhile, I'll try and do better working with her and the letter board. It is literally the blind leading the blind here. I can't believe, however, that the second we knew she was locked-in that they weren't working with her. I guess in that regard I should have gotten military on them...but didn't. Actually, she probably couldn't have tolerated even trying to learn anything until recently. I do have to remember that although we've known for a month that she was locked-in, it has only been in the last couple of week or so that she has not had any major issues and been relatively stable.
You realize, as soon as we give this girl a way to "talk" that we'll never hear the end of it... :)
Ah...I can't wait... my world is way too quiet without Sara yammering away about something or the other...I look forward to hearing what she has to say after all of this...
She did. I called both the day and night shift nurses to check in and they both told me that she's doing very well. She was in the cardiac chair today and tolerated it well. Her oral secretions are down a bit, which is good. No fever.
She's in bed now watching TV. I told her that her brother and I will be up there tomorrow.
Tomorrow I have a meeting scheduled with her doctors, the social workers, physical medicine & rehab and a discharge planner. We are going to discuss planning for her next few steps and make sure we're all on the same page for her care. Initial indication, since she is still ventilator dependent, is that she needs to go to a sub-acute care facility. It is one step above nursing home, one below hospital, but with no rehabilitation. But, before I get ahead of myself, that was just in discussion with social work with what they thought the next step may be.
I went to SRJC and got her student records. I also went to Santa Rosa Memorial and ordered a copy of her medical records. I've got quite the library of Sara-info growing. Her medical record from UC Davis is going to be huge...
I went by Pecoraro's Martial Arts on the way home from work today. I had not been in their new facility. Very nice. The Pecoraro family (John, Adam and Carol) are such amazing people. They've helped me with Michael before he went to Hanna (gave him a responsibility talk and held him to it), mentored Sara in life and martial arts for years, watched our family grow and change. And now they, and the entire Pecoraro's family (instructors, students), are standing in support of Sara. They've asked me to communicate to Sara their collective love, support and belief in her - I will do that tomorrow when I see her. They have something very special planned to honor Sara. I will let you all know about it after the fact, as it is something very personal for her.
I went and looked at a 4br single story house today. Not going to happen. The place was nice enough but it wouldn't fit. Basically I have to decide if Mike and I stay here until she is nearing being able to come home or visit, or move to a single story place and gradually setup for her, or move to a two bedroom place and save some money until she can come home or visit and then move. I guess the planning tomorrow will tell me more to go with. Its hard not knowing what to do, or what not to do.
I spent some time this evening looking at communications systems/software for Sara. It is the worst thing not being able to "talk" to people at all. That is what makes her saddest, I am sure. I talked to Kaiser today about what we could do about that and basically I have to apply for SSI and MediCAL, etc. for her and see what they will pay for. Meanwhile, I'll try and do better working with her and the letter board. It is literally the blind leading the blind here. I can't believe, however, that the second we knew she was locked-in that they weren't working with her. I guess in that regard I should have gotten military on them...but didn't. Actually, she probably couldn't have tolerated even trying to learn anything until recently. I do have to remember that although we've known for a month that she was locked-in, it has only been in the last couple of week or so that she has not had any major issues and been relatively stable.
You realize, as soon as we give this girl a way to "talk" that we'll never hear the end of it... :)
Ah...I can't wait... my world is way too quiet without Sara yammering away about something or the other...I look forward to hearing what she has to say after all of this...
Sunday, November 25, 2007
A visit with friends
Today was an eventful day. But in a good way. Mike, Sara's dad was at the hospital in the morning, and I arrived in early afternoon with a handful of Sara's friends in tow(Andy, Andrew, Kim, and Sylvie). Today, Sara's room was filled with laughter and sillyness. More decorations were put up in the form of a wonderful painting that Sylvie (sorry if i spelled that wrong) made, and Halloween themed rubber ducks from kim. Because Andy was there, The Game was lost many times. Sara actually laughed (or seemed to, as close as we could figure) at the notion of it. (for those of you that don't know what I'm talking about, don't worry about it.) We took turns visiting Sara in small groups. Mostly 2 or 3 at a time. Before we left, we all went in to her room at once to say good bye. We could tell that she was tired, but she didn't want us to leave. We stayed for a few minutes before we finally left. Mike stayed behind to make sure that she calmed down and got to sleep ok. By the looks of it, She enjoyed today's visit quite a bit.
~Daniel H.
~Daniel H.
The Circle of Friends
Sara is a very lucky woman...to have the friends she has. I know it has been hard on both them and her to not see each other. We needed to keep the stimulation to a minimum while she was in such bad condition, so I limited it to immediate family and Daniel. (actually..that was the policy at UC Davis...Kaiser has an open ICU policy...family oks visitors)
So..now that she is doing so well she needs her friends back, and they need her back.
We got together tonight to talk about her, her condition, answer any questions, tell them what to expect, what they'll see, etc. We talked about how she communicates, what she can feel, where they can touch her, etc. We talked about being themselves with her...if they want to cry, cry...if they want to talk aobut how scared they were/are, talk about it...if they want to crack jokes, crack jokes. The Sara they love is inside that pretty girl on the bed. She wants to get out as much as they want her to.
They are a real great bunch of people. I want to call them kids, but they aren't. Well, they are to me... But they are just very genuine people who care about her and each other. I am so glad she has that.
We talked about the next phase being a very long, often tedious road, for recovery. They know. They all seemed pretty well accepting of where she is now and what happens next. They understand her physical state. And I told them about her mental state.
She spelled her first word with the letter board today. She spelled sad. Sad. I looked at her and she started to cry, so I started to cry. We had a nice boo hoo about being sad about where she is, missing her kitty, missing her friends, sad she's so hurt, sad about the holidays started...lots of stuff she's sad about. I've been so fixated on getting her patched up from the physical issues that I didn't head off the mental ones. I mean, intrinsically I knew she was going to need to express her feelings, but we still don't have an easy vehicle for that yet.
Communication is going to be a big key for her. It's bad enough she's locked inside her body...but right now she's also locked inside her mind. There is only so much we can do with yes/no answers and someone who tires so quickly. I also found out that the nursing staff sometimes reverses the yes/no by accident...so I have to straighten it back out. Down is yes, up is no. Down is easier for her right now... But, I need to get somebody to tell me what I either need to do for her myself, or get someone who is trained to help her communicate via technology...and soon.
I totally understood them not wanting to start any kind of therapy, rehab stuff with her until after she was stable. Well, now she's stable, so lets get with it. And while we start that, she can be reconnecting with her social group and start looking ahead to the next steps.
(btw...I figured out that she was just super tired today. they are waking her up once an hour vor vitals checks...she's beat. they did a respirator off test yesterday, too, which didn't go well and beats her up. After letting her get a two and a half hour nap, and then working with her, she was fine. She was still tired, though and only stayed up about a half hour with me. Totally understandable. I'm going to ask the doctors on Monday to change her neuro check schedule to every 3 hours, so she can rest.
So..now that she is doing so well she needs her friends back, and they need her back.
We got together tonight to talk about her, her condition, answer any questions, tell them what to expect, what they'll see, etc. We talked about how she communicates, what she can feel, where they can touch her, etc. We talked about being themselves with her...if they want to cry, cry...if they want to talk aobut how scared they were/are, talk about it...if they want to crack jokes, crack jokes. The Sara they love is inside that pretty girl on the bed. She wants to get out as much as they want her to.
They are a real great bunch of people. I want to call them kids, but they aren't. Well, they are to me... But they are just very genuine people who care about her and each other. I am so glad she has that.
We talked about the next phase being a very long, often tedious road, for recovery. They know. They all seemed pretty well accepting of where she is now and what happens next. They understand her physical state. And I told them about her mental state.
She spelled her first word with the letter board today. She spelled sad. Sad. I looked at her and she started to cry, so I started to cry. We had a nice boo hoo about being sad about where she is, missing her kitty, missing her friends, sad she's so hurt, sad about the holidays started...lots of stuff she's sad about. I've been so fixated on getting her patched up from the physical issues that I didn't head off the mental ones. I mean, intrinsically I knew she was going to need to express her feelings, but we still don't have an easy vehicle for that yet.
Communication is going to be a big key for her. It's bad enough she's locked inside her body...but right now she's also locked inside her mind. There is only so much we can do with yes/no answers and someone who tires so quickly. I also found out that the nursing staff sometimes reverses the yes/no by accident...so I have to straighten it back out. Down is yes, up is no. Down is easier for her right now... But, I need to get somebody to tell me what I either need to do for her myself, or get someone who is trained to help her communicate via technology...and soon.
I totally understood them not wanting to start any kind of therapy, rehab stuff with her until after she was stable. Well, now she's stable, so lets get with it. And while we start that, she can be reconnecting with her social group and start looking ahead to the next steps.
(btw...I figured out that she was just super tired today. they are waking her up once an hour vor vitals checks...she's beat. they did a respirator off test yesterday, too, which didn't go well and beats her up. After letting her get a two and a half hour nap, and then working with her, she was fine. She was still tired, though and only stayed up about a half hour with me. Totally understandable. I'm going to ask the doctors on Monday to change her neuro check schedule to every 3 hours, so she can rest.
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