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.
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