Why does it have to be so hard...

Sara has actually had a pretty good day. Nurses reported that she was a lot more attentive today and communicating easily with them. I know it makes their job easier when she works with them. The only thing that concerned them today was her heart rate jumped up this evening and she seemed to be in pain. She wasn't, though. Just needed to go to poop... Don went up and saw Sara today for me, as I have had an extremely hard couple of days.

That's where the title of the post comes in...

As I've said here, I'm trying to bring Sara home. There is so much stuff to do for me to even see if that is feasible and more to do still to make it happen. I mentioned the program from MediCAL that would pay for 24 hour nursing care. Well, on thursday last week I got a call from a Kaiser discharge planner and notified that I had to find a nursing service to work with. She faxed me two pages filled with services to call. I started calling right away. I also jumped onto Craigs list and started looking for a house. Yesterday I got a call from the same discharge planner, being quite terse with me that I had not picked a service yet so I could bring Sara home. I told the planner that I still wasn't sure we were going to be able to do that, and I'd need to move too (which I told her on Thursday last week, also.) Well, she let me know that she was "doing me a favor" by even faxing me a list to work from and that she needed me to pick an agency by the end of today. That threw me into a tizzy, as I have been calling agencies. I think the potential nurses to care for my daughter ought to take a little more than a dartboard selection... But, regardless, I left work yesterday afternoon and looked at a couple of houses and firmed up an appointment to meet with one of two possible agencies today.

The house is proving to be a bit challenging - and its going to roast me financially for deposit and moving expenses, and clearing this apartment. And I have to explain about my newly disabled daughter...and then about the dogs...yadda yadda. I've been playing phone tag with a property manager that has three potential properties. And, my credit worries me. Well, it doesn't worry me - I know it sucks. How a property manager would regard my credit is what worries me... ugh. Decent income - bad credit. Hmm. No negative comments from the peanut gallery on who caused what, blah blah blah... I'm venting my thoughts...

Well, today, in the midst of interviewing a nursing agency I get a call from the discharge planner. She was quite displeased that I had not called her yet, at 1020 in the morning, to give me the agency that was going to care for my daughters nursing. She threatened me with a denial letter if I did not provide a name for her by 4pm today. A denial for what, I did not know at the time. But I was shocked that this woman was being so rude with me. The person I was interviewing could hear her from my phone and was also shocked.

After completing my meeting I drove home in tears, scared about what was going on, overwhelmed that I was feeling harassed by this woman, and so uncertain about how to handle everything on my plate. I pulled into the driveway and nearly passed out. In the driveway was a car, identical to Sara's, parked where she always parked. For a split second a flood of disbelief and then relief washed over me "good, its all been a bad dream. Sara's home. I have to tell her about this..." I pulled into the garage and shut off the car. When i got out I walked over to the station wagon and then it was obvious it was not Sara's. It could have been so easily. Identical car. That's when I knew that the universe was just trying to mess with me. And I felt dizzy and tired, my head hurt, my heart hurt, and all I could do was go inside and go to bed.

I walked up the stairs and the tears started to flow. Why does it have to be so hard to try and take care of Sara? Why does it have to be so hard to get through a day? I can take the mechanics of how to care for her traech, stretching her, working with communications, even all the body care. That doesn't phase me, actually. I can take the uncertainty of how to get her around. I can even take the fear of something unforseen going wrong and needing help. What I can't take is when someone with a limited view of the big picture takes the frustration of their job, or their idea of what I am or am not doing to help them do it, and delivers it back to me with threats and rudeness. I just don't understand that. I'm not that kind of person and I just don't understand that.

I called the ICU and asked them to page the social worker assigned to Sara's case. When I finally got a call back from her I opened up and told her everything that was going on. I didn't "open up" as in a can of whoop ass, it was emotional. I went to tears again and kept apologizing to her for crying, but I was just overwhelmed. I told her what the last 24 hours have been like and what my perception of all this is. She listened and offered some explanation, with a promise to work on a solution and call me back. She did answer my question as to what kind of denial such a person could issue. Apparently, if there is a viable care alternative for Sara, and I refuse it, then they can issue a denial letter and basically void the authorization for her hospital stay. That would make the family financially responsible for her care and then her insurance could be terminated. Well, I told the social worker that there wasn't a viable care alternative offered or refused, and I didn't understand why this woman felt there was. Apparently, when they told me of a possible program with MediCAL, this woman decided that this was the only thing to work on and stopped looking for a subacute bed for Sara. I told the social worker that they never should have stopped looking. Hell, they never should have made ME look for a subacute bed for Sara in the first place. That is what started this whole MediCAL and home thing in the first place. The discharge planner faxed me a list of subacute facilities contracted with Kaiser and told me to find one with a bed. That is her job. But, I called them all and ended up calling the social worker frantic that there was no room for her anywhere.

So, she told me that if Sara going to subacute was the primary discharge goal (which it should have been all along - THEY changed that) then Kaiser could not issue a denial letter, unless I refused to allow her transfer to a facility they found. I told her I wouldn't do that, unless it truly was inappropriate care for her. I told her also that now I feared that the discharge planner would retailiate against us and put Sara in the first nursing home bed she could find as far away from home just to get rid of her. I was assured that no retailiation would be coming, but she did understand my fears in that regard.

This is turning me into one big physical and emotional knot. I am totally willing to do whatever I have to for my daughter. And YES, I want to bring her home. Its all I think about sometimes. It is the only way I can get her access to the only treatment which MAY help change her outcome. She's not ready for intensive rehab, so why have her languish in a nursing home with old stroke and dementia patients until she is? I'm fully intending on setting up a therapy room in the house so we can rehab her at home until she can withstand inpatient rehab. And she would still be able to rejoin her social group, and be surrounded by her family and have access to her animals. All these things are important. Just like with everything else, it takes time to put it all together.

Meanwhile I'm working full-time, consulting on the side, making phone calls working on all this stuff, driving two hours each way to Sacramento to go see her, leaning on my boyfriend for moral support and the occasional kick in the ass, spending 2-3 hours with her and coming home, sleeping for a few hours, waking up, spending 30 minutes or so with her brother getting coffee and taking him to school, and repeating the cycle. I'm not sharing this for sympathy. I'm actually proud of myself for being able to handle all this as well as I have. (and grateful and thankful for my job - where I get to actually fix things and help others)

I'm just having one of those unfortunate days where it all comes crashing in on me. My depression gives way and the hard stuff pulls me under the surface, and the lump in my throat is holding the tears in and the water out... I can't breathe... so I close my eyes and sleep...

Quiet monday

Sara is stable and doing ok. She continues to work with physical therapy for even the slightest progress. She is currently working on strengthening her eye movements of her left eye.

I went to the hospital yesterday afternoon and her therepist was just getting ready to work with her. She spelled out a note for her grandmother - I Love You. Considering the amount of effort it takes to spell out words, its huge. Grandma Sande has her surgery today (tuesday) and she is very much on our minds and in our hearts. Sara and I are sending her all the strength we can spare and anything that she needs. After working with Therapist-Rachael, all she wanted me to do was crawl in bed with her and talk. So, I contorted my big body around her and put my head on her shoulder. I wrapped my arm around her tummy and rubbed her hip while I told her about this and that. She and I ended up watching part of the state of the union. Well, I watched it...she kept her eyes on me. She looks at me a lot...almost like she can't believe I'm there. haha...probably a lot like the way I look at her. I know she is amazed at how much her mother loves her. Honestly...somedays I am too...

I went home after a few hours and got to spend a little time with Michael before he had to go to bed. That was a treat. He told me about his day, and his new schedule at school. He's not thrilled with having to take an Art class, which I understand. His skills and interest would be better served taking a Shop Art class, but he needs the credit to graduate. Yeah...graduate. That's next year. Jeez i'm old... :)

Spa Day

So today (Sunday), Kristina and I gave Sara another spa treatment. (or at least as close as you can get in a hospital) Kristina asked if Sara wanted music or a movie while we were doing it, and Sara said 'no'. She just wanted to relax while we did it. So Sara got nice and extra clean today. I left before Kristina. But as I was leaving Kristina was putting nail polish on Sara's toe nails. So its a full service deal. Complete with smiley face toe spreaders.

I didn't talk to any doctors or anything today, so as far as I know, nothing new medicly. However, I did finally get my hands on a copy of "The Silmarillion", and started reading it to Sara. Its a hard read due to all the wierd names. I'm probably mispronouncing them all. But I guess the both of us shall have to live with that.

Thursday/Friday

Sara continues to do well. No changes medically, and that will be our new norm.

I received a listing of home care agencies today. I have to start calling all of them to find a service that takes the MediCAL (most do) and have staffing so I can bring Sara home. The program also requires that at least three of us here are trained to care for her - ventilator, dressings, tubes, cleaning her, managing tube feeds, etc. That is in case of emergencies - like the nurse doesn't show up, etc. I'm one... I asked Michael and he doesn't really want to do it. I can understand that...he's a kid...and becoming someone's caregiver is not normally on a kids list of things to do.

I went and hung out with Sara lastnight. Nurse-Deborah brought in a bag of VHS videos and Sara's been watching movies today. They moved her to a room that has a VCR, so she's getting to see something more interesting than her surroundings and basic TV.

I talked to her for a long time, too. Oh, and I also re-did one of her communication boards. This is broken up into 5 different sections - physical, interests, feelings, social and alphabet. I simplified it so that the nurse can ask her what her need is and she has 4 basic selections, then a brief list and options so that it is easier for the nurses to communicate with her. She is solid on everything yes and no, but there is so much more for her to say than that.

She coughed a bit and I ended up steadying her by putting my arm around her shoulder (she had come off the bed with the strength of her cough). When she relaxed after her cough I told her I missed holding her. She said Yes. I asked if she missed it too. She said yes. So I put down the bedrails and got my arms around her, rested her head on my shoulder and rocked her. It was so nice. When I closed my eyes I could just feel her against me and shut out the sounds of the ICU...she and I could just be in the big chair in the living room... After a long while I pulled back and looked into her face. I could see she had missed it too. Now that she has the collar off I just have to be careful, but she's not so fragile now and I can hold her. Just don't knock off her breathing tubes and we're good. So I will. It gave me such a good mommy feeling - I had forgotten how good it could feel to just hold your child...

Friday Tracy and Michael went up to see her on the way to Tracy and Denise's house for the weekend. I'll let Michael update anything. Sunday Daniel and I will be at the hospital giving Sara a nice spa day. Her skin is really starting to show the effects of being in the hospital for now 92 days. Yeah, we went past 90 days. Hard to imagine its been that long, hard to feel its been that short...

Hard day for the girl...

No medical scares today. But, she did have a hard day and cried a lot...

When I showed up it was obvious she had been crying. Nurse-Deborah told me she had been also. I asked Sara what was wrong and did she want to spell it out for me - she indicated Yes.
She spelled out "cold". She had been cold all day and it made her ache. She and the nurse weren't able to figure it out and she cried out of frustration and pain in her legs. I pulled out a big soft blanket and tucked her in nice and warm, then washed her face, kissed her nose, rubbed her hands and legs. Gave her a nice tuck in.

I asked her if that was all that was bothering her today and she indicated No. So I started asking her questions until I was able to come upon the fact that she's sad that Therapist-Rachel isn't going to be able to keep seeing her. Rachel is now on maternity leave to have her first baby. Sara and I talked about how there are going to be different people who she bonds with while they help her and then they will go away - she will progress past that level or change shifts, any number of reasons. It is ok to be sad that they won't be there for you, but be glad that they were and made an impact on your recovery. I reminded her of Nurse-Carlo. He made a huge impact on her and made her feel safe when she could hear his voice. That was so critical in the first two weeks when we were all coming to grips with what Locked-In Syndrome was all about. So I reminded her of him and asked if she missed him, which she said Yes. Well, I told her, that was ok - he touched her life and cared for her - that makes him special and always a part of her, just like Rachel will be now. But life goes on for everyone, including her. We talked a little while longer on this and that, and told some pretty bad jokes to her.

I did have something to tell her, though, that was hard to do. I don't keep anything from her. So I had to tell her that someone very dear to her has been diagnosed with Cancer. She burst into tears and actually sobbed. It is scary and close and I know she wants to get out of the bed and jump on an airplane to go help. I held her while she cried and looked into her eyes and stroked her face and talked about what we COULD do from here - send love, good thoughts, work on getting better so there is less to worry about with her health, and when she feels up to it write a special note. I reminded her that it is much better to know and be able to send good loving thoughts, then one day get a phone call that somebody you care about has died or is seriously ill.

Where do you go from there...? I feel bad that we can't pick up and go help and be there...I know Sara does too...

I took her laptop to the hospital so she could start watching the mountain of DVDs she is accumulating. Well, it didn't work. Apparently Mom, the technology professional, didn't get the right video codec downloaded and it wouldn't play. She did laugh at me, so it wasn't a total loss...

I'll take it to her today - providing I get it right this time. Hey...maybe I should test HER stuff too, like I test stuff at work... :)~

Sara makes my day...

She spelled this out to me on the letter board.
My baby girl loves me...

The big smile that followed it. She saw how

happy it made me.

What an awesome kid...

Evaluated for a speech device

Yesterday Sara was visited by her speech therapist and a representative from a company that makes speech devices with varying inputs. Well, Sara took to the device like a duck to water. She easily controlled the machine and was building words and sentences in a few minutes. The speech therapist commented to me today that Sara obviously has been working on the skills needed for this step.

Well, of course she has... She hears and sees everything that goes on around her and during her first evaluation they said out loud what she wasn't able to do and that she wasn't ready. That's enough for Sara to hear... That initial evaluation was a month ago and this time she was ready for it.

The Speech Therapist checked and Sara qualifies for total reimbursement for a dedicated device. We can purchase a license key that would allow the unit to be upgraded to a standard device, allowing her to be able to chat online, email, browse the internet, run other applications, and even make private phone calls from her unit. (Private meaning that she could initiate them herself, and listen, and respond with inputs that would be synthesized and played for the caller -without anyone having to help her or monitor her call).

She is working on the authorization with Dr. Neurology and then it will take a couple of weeks for the device to be received. Sara had her choice of colors...and chose pink...like her DS and her iPod. Silly girl...even now... :)

I joked with her and her brother that once she gets a device she'll never shut up...I'll have to take her batteries out to get any peace around the house... That got a big laugh out of her. I guess I should tell Michael not to hack his sisters voice... :)~

Holiday at the Hospital

Title basically says it all. Power at SSU (where my school is) was out today so no robotics, plus it's a holiday so no school. So I decided to go up to Sacramento to see Sara.

She wasn't expecting to see me (see, robotics typically means I don't do a whole hell of a lot other than... robotics for six weeks), and she seemed pretty happy. She moved both of her arms a pretty noticeable amount and we told her jokes most of the time (or just generally funny stuff).

We also told her about being able to come home (possibly). She seemed pretty happy about that.


I learned how to use the letterboard today. She spelled out "I love you" for mom and when I used it, she spelled "Raindear". I have a feeling she was messing with me... How typical.

Well, I've nothing else to say, really.

Sunday, 1/20/08

Sara's best friend Victoria went with me to see Sara today. I let Victoria talk to Sara alone for a while as I sat out in the hallway and assembled another strand of cranes. I tried to find Sara's copy of the the J.R.R Tolkien book she wants me to read to her, but was unable to find it. So I'll have to borrow it for a friend who said they had it. In the mean time she seems to be enjoying listen to me stutter as I try to figure out stuff to talk about.

At one point I noticed a rash on her arm where the IV goes in. I pointed it out to Sara's Nurse, who called the 'PIC' nurse in to take a look at it ('PIC' stands for something medical I'm pretty sure, but I don't know what. It has to do with IV lines though.) He said that it looked like the prep wipe they used didn't dry all the way before they covered it up again. Apparently he'd seen this before. So he uncovered the spot on her arm and replaced some things, letting the area dry more. It looked better. He said that he would be in again in the morning to check in on it and see if there was still a problem.

Other then that, just coughs. The respiratory therapist in there today said that she had good strong coughs, and that people with strong coughs generally come off the ventilator pretty well. I don't know how much experience this guy had, or how accurate his assessment was, but it was encouraging to hear none the less.

OPEN OPEN

Saturday was so cool with Sara. I called Kristina to find out what her new room number was and made my way there. It’s just a few doors down from where she was. I walked by the windows like I had missed it and then doubled back. She was facing the window and saw this. She had the biggest smile on her face I have seen yet. It was amazing. As some of you may know, I am a big old goof. I then walked up to the windows and did the Mervyn’s OPEN OPEN thing on the glass and you could see her laugh hard.

We talked for a bit and over everything that was happening with me. Told her about my girlfriend and said how she would like to meet her. Sara said yes to that. I then asked if she was ok with me having one and she smiled and said yes. Well as we were talking, I asked her if there was anything new she could do. Well this monster showed me a lot. She opened her moth more than half way. I was surprised at that. Then she started moving her mouth side to side. That one shocked me even more. I asked her what else she could do that she wasn’t showing me. But she held back and just smiled. That kid gets so stubborn. I asked her to show the nurse. She did the side to side for her, but would not open her mouth for her. I think that because she hates it when the nurse brushes her teeth and doesn’t want her to know she can do it that well LOL.

Anyway, she got put in the cardiac chair for a few hours after that and we watched a couple of episodes of ER. Sara started to get really tired from all the events of the day. So the nurse moved her to the Bed and she and I talked a little more. I confirmed for her in her mind that I loved her and was so proud of her. I also reminded her I will always be there every Saturday to keep pushing her to do more. ( except for the time I was sick I added ) She thrives on that.

Well I left the hospital and called Kristina and told her about the day. Even though I document what happened during the day here. I still call her just before and just after visiting Sara. The call before is so I can know if there is anything that I should be aware of or watch for with her, last minute messages from Kristina, or things that she thinks I should know before seeing her. The call afterward is so I can tell her how the day went with Sara and give her anything new that I found out. I can’t wait to see what the Kid can do next week.

Busy week for the girl... OOH, and...

Sara has been quite the social butterfly this week. She got visits from Daniel and Tim on Tuesday, and then Joseph and Ren on Thursday. She also got moved from a room without a view, to one with a window that looks outside. She's been enjoying looking outside.

I went to the hospital on Wednesday and she and I spent several hours with me talking to her. Then we watched some SpongeBob Squarepants.

Its funny that even though she is non-verbal that she is so communicative. Her eyes are expressive, as is the rest of her face. Tim was right - Sara's real smile is back. It is so nice to see... I told her she doesn't look so dee-dee-dee anymore and she smiled again. I'm so glad she still has that sense of humor.

We talked about a lot of stuff, including her step-mom. She wants to see her and talk with her and I. I am sure some feelings will be cleared up and we can all move forward feeling better.

I got a great phone call yesterday. I may not have shared everything about trying to get Sara an alternative treatment. She did not qualify for the sildenafil citrate study, but is a good candidate for its compassionate use. Unfortunately, Kaiser won't provide the treatment or allow us to have it provided to her while in a Kaiser facility. So, I have been just knitting myself in knots trying to figure out how to get her moved to a facility that would allow it, without jeopardizing her Kaiser care. I've been getting more and more uptight about it, because any benefit the therapy may have on her diminishes the longer we wait to start it. So, time is of the essence for this possible help to her locked-in syndrome. And, I haven't been able to just "let it go" because it could make a significant change in her outcome. So, i've been working to solve that dilemma.

Well, after voicing my frustration and fears to her social worker on Tuesday Gina went to work trying to come up with a solution. That is what the call is about. Apparently, in the eyes of MediCAL, Sara is still a child and elibible for pediatric care. One of the programs will allow us to bring her home, with 24 Hour LVN care! That means she would be at home, with 1 on 1 nursing, her ventilator managed by a nurse. This is absolutely awesome. I voiced my concerns regarding continuing speech and physical therapy during that time, and she's looking into it. BUT, if we can swing this I can bring her home, get her the alternative therapy that could help her, get her friends and social group back into her daily life, get her the standard physical and speech therapy to keep her moving towards intensive stroke rehab. AND, if something happens, she can still go back into a Kaiser hospital. AND, when its time for intensive stroke rehab, she can go back to the world-class Kaiser facility in Vallejo. AND, anything not covered by Kaiser is covered by her MediCAL - except maybe the compassionate-use drugs. I am contacting the manufacturer to see if we can get either a grant of medication for use, or a discounted rate for compassionate use. If not, well, then we'll pay full price and just find a way to make it work.

So, I am excited about the possibility of having my girl home, with the care she needs, and the therapy that could help her recover. I'm terrified about it at the same time. I HAVE to move now and get a place setup to accomodate her and a nurse (and the rest of the family :) ) I have to get a vehicle that I can safely transport her in. ( The neurologist I found that would administer the compassionate use therapy and track her progress for the researchers is in Berkeley... ) And a dozen other things I haven't even thought of...maybe two dozen...

I haven't told her yet, as I don't want to get her hopes up before knowing more...but its going to be hard to keep this from her...even temporarily...

Movies with Friends

Today Tim (one of Sara's close friends) and I went up to see Sara. I knew that the request to have Sara moved to a different room had been put in, but I didn't know it had happened yet. When I got there I went to her old room and almost walked in on an unsuspecting sleeping old guy. Fortunately the blinds were open and I could see it wasn't her.

After backtracking to talk to a nurse, we went to Sara's new room where she was looking out the window. As soon as we opened the door She had a huge smile on her face. She hadn't seen Tim since before the accident. After a bit of silly stories, Tim broke out his laptop and we put in a DVD of some short animated comedy segments. We ended up skipping most of them to watch the one at the end, which was "Here comes Dr. Tran" Which is something we (Myself, Sara, and our friends) have been watching and quoting since high school. Even though she can't make any sound, you could tell she was laughing with us.

After Dr. Tran, they put Sara in the cardiac chair for a second time today and we put "Snakes on a Plane" into the DVD player. It's not a great movie, but its one we can watch together and laugh at. Towards the end of the movie, the physical therapist came in and was talking to us and Sara about her communication. Sara communicated that she was uncomfortable. when asked what was wrong, Sara used the letter board to spell out "My tail bone". So we shifted her in her seat and went back to finish watching the movie.

Tim and I left shortly after the movie ended. Nothing new medically. Just the usual coughing. As we were leaving Tim said something really cool about how Sara's smile was truly Sara's smile. Unfortunately I don't remember all of it, and I have a feeling that trying to recreate what he said wouldn't do the original words justice.

~Daniel H.

Cruising right along...

Still trying to find another place for Sara. I am amazed at the shortage of hospital beds in almost every location. No matter...we press on...

Didn't get up to see Sara yesterday. I was running on a deadline on a project and by the time I got out of there it was well past a reasonable time to drive up, visit, and drive back. I did call and asked the nurse to explain and ask Sara if it was ok that I skipped yesterday. She said "Yes". She and I have done this before, and she said "No" - in which case I jammed up to Sacto. But it was nice that she was understanding. That is only the 5th day since this started that she spent without seeing family or friends.

I called and checked on her lastnight. She was sleeping. Nurse said that she had a nice quiet day, nice quiet night. Watched the nurses in the station and some TV. She also got a bit of a treat...they moved her room to one with an outside view. It will be the first time since her accident that she has seen outside. Not much of a view, but there is sunshine and activity other than the hospital. I am sure that is a refreshing change...

So, if you are going up to see her, call me for the new room number.

K

More Photos

My inital plan of reading to Sara today was thwarted because I forgot that the book I was going to be reading to her was burried in a box somewhere and I failed to try and retreive it sooner. So instead I spent this afternoon talking to Sara about my week and going over some new pictures I uploaded onto her digital photo frame. It has over 2 hours of pictures now. So I spent a good portion of my day watching all the photos with her and providing comentary. I got plenty of smiles out of it too.

I also brought up 2 CDs by "The Killers" which she had requested earlier. So we had those playing in the background durring the day. Her feet were starting to flake and peel pretty badly again so I scrubbed them a bit and rubed more lotion into them. Other then that no issues.

She had already been in the cardiac chair for a coupple hours by the time I got there. Nurse Deborah said she had tolerated it well. Apparently, instead of leaving her in her room alone while she was in the chair today, Deborah wheeled her out into the nursing station as far as she could so sara could see a bit of what was going on outside her room. I'm sure it was nice to have a change of scenery and get to see more activity. Apparently Sara was very awake and looking all around. She got to see nurses doing nurse things, which I imagine was nice since its similar to what Sara did for work. (She was a pet nurse, and she loved her job) Because her time in the cardiac chair was more stimulating then normal, she was in it for a shorter amount of time, but I have a feeling she got more out of it.

~Daniel H.

Saturday with Dad

Well I should have posted this last night, but sat down to dinner and started reading. My roommate woke me up this morning in the same chair. Sigh, when I sleep, I sleep.

Now on to Sara. I got to the hospital and she had a big smile on her face. I told her I was sorry I didn’t get to see her last weekend from the flue. She was already in the cardiac chair and looking really good. She had her neck brace on and I asked the nurse about it. I had read in the blogs that she had it taken off. Deborah explained that she put it on when she is in the chair just for the support. When she gets moved back to the bed, it would come off. Well I got telling Sara all about things going on with me and we joked with each other. I also let her know that Dusty was out of the woods. She smiled when she heard that.

She has the best sense of humor and love to mess with me. So she would mess with me on false answers and laugh when he poor old man figured it out. We went back and forth like this for a while, and then it was time for her to come out of the chair.

I got kicked from the room by Deborah while she got cleaned up and moved. After about 30 minutes in the hall, I was allowed back in again. I asked Sara if she wanted to watch videos on laptop again, and she answered yes. So I pulled out all the videos I had brought up and had her choose which one she wanted to see. She chooses Stargate SG1. That was our show ever Friday night when she was younger. I bought a set of speakers for the laptop because the last time we watched a movie on it, the speakers where so low it was hard to hear. Well we didn’t have that problem today LOL. Well we watched 2 episodes and she was glued to the laptop. We had to pause a few times for standard nursing things that had to get done. But it was a good time for both of us.

It reminded me so much when we would sit up all night Friday night and watch SCI-FI channel late into the night. It’s one of my fondest memories with Sara. We would sit up all night and tell jokes to each other and talk all night. As she got older and got more involved with friends and boys, that Friday night ritual slowly faded. I missed it, but I also understood that she was starting to grow up.

Well I didn’t have any symptoms from my flue, but I was still very drained from it. I left Sara and promised to see her soon. I am so looking forward to her being closer to us so I can have more opportunities to see her.

Dusty - update

Sara's cat is as amazing as she is. Woke up this morning and he is purring, meowing, eye looks better. He ate, drank and did his box stuff just fine. He even jumped up on the bed. That is an absolute 180 from yesterday.

Took him to the vet this a.m. Dr. Vet says he doesn't have to lose the eye. He gave him two real big syringes of subcutaneous fluid and sent us home. He says to keep up with the antibiotics. He now thinks the eye issue was from an injury, instead of tumor. There is no other evidence on the cat of any injury, and he was safe at home when this started. So, we just don't know.

In any case, I got to call Mike Bartholomew and let him know to give the girl the good news on kitty kitty. I'm sure she was sending him loving thoughts lastnight. Probably where he got his 10th life from...

Sara and her Kitty

Sara continues to do well. She is stable on the ventilator. No infections, fevers or anything else concerning. She just continues to cough junk out of her lungs and get stronger breathing. Her tidal volumes are now up in the mid 600s even when lying down.

When I came in her room tonight I had one of my serious, but not trying to scare the girl faces on. Her beloved cat, Dusty, is having some pretty serious issues. He stopped eating two days ago, and has been drinking little. He seemed ok yesterday morning, but by the time I got home last night it was clear that that cat was ill. One of his eyes was swolen and bulging, not reacting to light and it was obvious the cat was not well. I fretted on whether to take him to the animal emergency hospital, or wait to have him seen at his regular vet. I opted for the latter, as he is also a dear family friend.

When I spoke with Dr. Veterinarian early this afternoon he had said that the cat was in very bad shape. Would certianly lose the eye, if not die altogether if he did not eat and drink. We briefly discussed options. I left work sure I was going to have to tell my daughter we were going to have to put Dusty to sleep. She loves that cat more than anyone or anything in this world.

By the time I got to the vet office a few hours later, the cat was doing better. Not great, but better. Dr. Vet had given him fluids, shots,done tests, and the cat ate for him. His eye even looked better. He said that maybe it wasn't as bad as earlier thought, but the cat would almost certainly lose the eye. He sent us home with a handful of oral syringes to administer to Dusty throughout the night and we'll decide tomorrow morning what the plan is.

So, after getting to the hospital, I had to talk to Sara about it. I promised her I wouldn't keep anything from her, and this certainly is something she'd want to know. I explained everything, talked about the cat, and we discussed the options for Dusty. We're going to let Dr. Vet tell us when it is time, and then she just wants to say goodbye beforehand. I think Sara took all of this much better than I have. But, she and I are both hopeful that the cat has at least another life in him...

I talked to Sara about her Father visiting and her step-mother issues on his behalf. I told her that although I felt that her reasons were between her and Tracy, that I was going to ask because feelings had been hurt and stuff had blown way out over it. Basically, Sara is ready to seeing her father about as often as she did before her accident. She does enjoy seeing him, and she's not upset about anything. She's just ready to get back to normal with him. I did ask her if he could come up and ask him about this himself and visit with her on Saturday, as her father and step-mother now question my honesty or accounting of communications with her. She agreed. So I called her father after leaving and let him know. There was quite a bit more to the conversation than that, including an earful from Denise on everything i've ever done wrong in her eyes. I'm not even angry with her for it. Just sad.

I will say, to everyone who follows this blog, my intention was never for this to become a discussion forum between the people most important to her. I am sorry that either postings or comments here have tangented away from the real reason I started this - as a means to communicate Sara's status and as primarily my outlet and record of this journey. I opened it up to other family members to post, so we could each share our portions of the journey with her, if so inclined, with the many, many people who care about her. This is about Sara.

That being said - I am keeping the unfortunate entries up. But, I will ask that people not call Denise and give her any shit about her posts, or comment unkindly to her either in person or on my blog. She's entitled to her opinion, although it would be more helpful and appropriate if she picked up the phone to share it.

The A Number One rule of THIS family (myself, Sara and Michael) is "Kindness Always". Let's please keep only that tone in our posts and comments going forward.

Anybody take exception to any of my posts or comments, please email me directly at NetzillaKB@gmail.com.

I'm going to call the ICU now and check to see if she is sleeping ok, then I am off to bed. I have a lot of work this weekend, and she has lots of visits...

There are no lies here...

Wow Denise. I am sorry that any of my posts, words, or actions have caused you or Tracy such grief. Any omission on the blog, regards the conversation I had with her yesterday, was purely to spare any public criticism or questions regards Sara and Tracy. I figured that if she didn't want to see him, she had her reasons. I did not question her about it, figuring it was between him and her. I didn't figure it was right to air that part in open forum. Kindly forgive that omission, as it was meant with good intentions.

I don't know where to start with reply to your post, Denise. Please understand, first and foremost, that I have nothing but appreciation for you and Tracy. You guys did something amazing by keeping her on Kaiser, and fighting so hard to protect that. I have not stated anything to the contrary with anyone at any time.

My entry about the medical system at work. Well, that's a bit more complicated. You are right - neither Sara nor I maintained her on ANY insurance. Reason - money. When I was forced out of my job by my business partner, Mark Spongberg, I lost all benefits. He also has to date kept my 13% of the company, although I asked him several times early on to make me an offer for it. so I got to walk away from something I had spent years building with absolutely nothing. If that wasn't bad enough, while with the company I helped found, my business partners modified the medical coverage I DID have, just in time for me to have a car accident myself (with a severe concussion and months of post-concussion syndrome) and then I got the joy of my first mammogram and finding 3 potentially cancerous tumors. Biopsies, and a double partial mastectomy later, I found out the result of my partners changing the coverage - I had 20K in copays/coinsurance and then was out of a job and lost everything, including the ability to pay it. Forget COBRA, I couldn't make the premiums. You don't know this but there have been many months that the cupboards were very lean and we did without almost everything. That doesn't matter, though, I see. So, you feel I made a choice - the choice was made for me. You don't know what my life is like, or what I have to go through just to try and raise my kids. I'm not complaining. I'd rather live in a tent and eat cat food than live without my children.

That being said - It has made me sick and fearful that something would happen to one of us. Not that you'd believe it, but things were really starting to look up for us. My consulting was starting to become more steady, I was getting old bills paid, I even turned back on the DirecTV. We didn't have TV for almost a year. Not that it is any kind of necessity at all. Just offering that as an indication that things were starting to look better. I'm sure you'd offer that I could take that $60 and apply it toward the $600+ premium it would take for medical for the family. Just needed another $540 to make that work. And, before you point out that Tracy pays me child support of $494 per month for both children, and I could apply that towards that - well, it was still going for food. That's what I almost always use it for. I can only do what I can do.

I know that the government is not a charity. But there are provisions OF LAW to take care of certain citizens, and provide assistance and entitlements. You'll be familiar with a big one, Medicare...You're a very smart woman and know many more, I am sure.

You are right...I haven't spent a dime so far on Sara's care. Just the driving back and forth almost every day, sometimes twice. Just the countless hours researching anything I can do to help my daughter. I have had incredible phone bills calling specialists, researchers, facilities. Just the mountains of paperwork and the days spent sifting through state and federal government agencies to ensure that benefits that are legal entitlements for her are taken care of for her and can start so that her long term, ongoing, lifetime care needs can be met. I have lived on coffee and little else. Had to have my car repaired twice for nearly driving it to death. I've payed hundreds of dollars for her medical records at both of the first hospitals. I have purchased things to entertain her, comfort her, and care for her and her body. I have paid all of her personal bills and taken care of ending ongoing expenses that way. I went crazy at christmas and tried to make it the best I could for Michael, Sara, Sande, Daniel. And I have been doing that at the same time I've been trying to go back to work and try to make a living, take care of Michael, maintain a relationship with Don, and care for myself. I have had to play air traffic controller with her visitations, so someone is there every day. I've had to listen and be a sounding board when she didn't want to see someone and their feelings got hurt. Believe me, Tracy is by FAR not the first person she decided she did not want to see, or that she wanted them to leave. And i know that hurts - and I am sorry. But i can't imagine he'd want to go there when she didn't want to see him. Apparently, I am wrong in this assumption. So, yes, I have to date not had to pay for any of her medical care to date. And you have paid all the premiums, without ever complaining about it. But, at some point, as you know, her entitlements for some things in Kaiser will run out.

Tracy has made VERY CLEAR to me that when you retire the Kaiser ends. Scares the holy shit out of me, but it is what it is. I shouldn't just say "the Kaiser". I should say "your Kaiser." And, yes, Sara has been in ungrateful bitch to you in the past. Yours has been quite a terse relationship, on both sides. Would you care for me to share the why and how here, or is that omission ok with you? Same thing goes for Sara's relationship trials with Tracy. Share, omit, ok? My preference is to omit, as I believe that is still between you and Sara and Tracy and Sara. Despite what you may think of me to this day, I am a good and kind woman. I don't like conflict and have gone to great lengths in my life to both stop and avoid it.

And, I have been told, by Kaiser, that they want to be able to bill MediCAL and MediCAL extended for some of the expenses and the ongoing stuff. THEY have started preparing me for being out on the street with a quadraplegic daughter. I'm just trying to figure out what to do here. Cut a woman some slack... jeez

So, when you retire and you and Tracy move to Arizona, I'm going to be here caring for Sara - for the rest of her life. No problem, except the paying for it. But, that is my worry, isn't it. Tracy has been mentioning to me about the insurance so I can see what i can do before that happens. He has mentioned at least twice that he is worried about financial ruin for her medical expenses. I am, too. Thank God I am only responsible for half of them going forward... Has he mentioned that to you? He even suggested that I put everything in her name, so that if somebody had to get ruined financially, it would be the person without any finances anyway. Yeah, I figure its my bullet to take, just the same. So, I am trying to work full time, get benefits, and work everything I can for her.

But, YES, the fact that your Kaiser was available saved Sara. I again speak with love (yes love - is it misplaced? you still seem to hate me...and i've never wronged you) and admiration for you that you did that, despite the relationship you and Sara have had. YOU weren't required to have her on insurance. Tracy was. I was. Tracy and I both failed to protect Sara, not just me. And you, for whatever reason, saved the day for both of us, but mainly for Sara. She'd be dead. Tracy has expressed many times that would probably be easier all around. Well, I've been that route before, with Christopher. Losing Sara would be much harder than losing Christopher, and that nearly killed me. The only thing that saved me was being pregnant with Sara.

But I'll stop rambling here. I don't know for sure WHY Sara didn't want to see Tracy. If I had to hazard a guess, it would be that she doesn't want him asking the "big questions". You know the ones. "do you want to keep fighting?""do you want to live?""do you know what that means?" She doesn't want him asking those questions. THAT I DO KNOW. Know how I know? I asked her, after Tracy and I talked on Saturday. On Monday her Grandma and I went up to spend the day with her. And I asked her, as I always give Tracy the benefit of the doubt and told him I would continue to check with her. She indicated that she doesn't like the questions. She knows I will still ask her from time to time, if I see her will waning. Her will is certainly NOT waning at this point. But, Tracy decided, for whatever reason (despite the fact that HE and I discussed him NOT asking her those questions) that he would ask. She indicated, in front of her grandma, that she didn't like it when he asked. She told him what he wanted to hear so he'd leave it alone. Is she lying to me, or to him? My guess is him, given the fact that she could shut herself down at any time, and still keeps fighting. But, again, I didn't want to get into this, in this forum, or at all. I was perfectly willing to just let it go and not stir up a bunch of hurt feelings and shit.

I don't know how to make you NOT feel that you are only useful for keeping Sara alive. That feeling you chose to have, and chose to feel like you're being used. You are certainly not. It is up to you when you chose to drop your own Kaiser, and subsequently my children. If you want to keep it going, to retirement and beyond, I will gladly, happily, pay the premiums for it. it is absolutely the least I can do for your generosity, and your forward thinking. You tell me what I should do here. You've always seemed to know best when it came to me and my life and my kids and their father. So let me know how I can make this situation palatable for you, if not tolerable. You saved my daughter. I don't know what else to say, except, there are no lies here...

Lies of omission are lies nevertheless

This blog is really the only way Tracy and I have to know what happening with Sara day to day. Until recently, we trusted that what was represented here was the truth. We found out last weekend that either Kristina is lying to us about what she has discussed with Sara, what Sara has said, or that Sara is telling her mother what she wants her to hear, and telling us something different.

Kristina claims in today’s posting that she “ask[ed] her if she was looking forward to seeing Tracy and Denise, Mike and then Daniel…” What she did not tell you all here is that she called last evening and told us that Sara didn’t want to see her father. And as far as I know, no reason was given. Enlighten us, since Sara can’t speak to us for herself?

This was Kristina’s post on January 9th:
This is our medical system in operation... You can get really fine care, tip-top nursing - but only if you have insurance...and only if the insurance company doesn't drop you after starting to pay for fine care, and tip-top nursing. And, as I have recently found out, the benefits provided by the federal government and state are enough to keep you basically alive, but don't mess up the paperwork or forget to send something in on time...

The federal government is not a charity, and health care is not one of the inalienable rights in the constitution. Kristina, you made the choice not to have insurance—neither you nor Sara had any insurance on her! Second, you have not paid a thing toward her care, which probably exceeds over a quarter of a million dollars by now. The first day alone was nearly $110,000! You don’t even need to see the paperwork—all the “Explanation of Benefits” comes to me. And you have the gall to criticize Kaiser. Where do you think Sara would be today if I hadn’t kept her on my insurance as long as I was able to without her permission? She even had the audacity to argue with me when, on her eighteenth birthday, I told her that I wanted to keep her on my insurance until she was out of college—all I needed was verification of her student status. She refused—“I don’t need your insurance, I don’t want your insurance, I’m a very healthy person. I’ll get my own insurance!”

It was a different tune after the accident though, eh? It was only my successful pleading with the staff of the Alameda County Human Services that reinstated her on my Kaiser, since her nineteenth birthday had gone by and she was scheduled to be dropped on the last day of the month of October. At first, they were more concerned about preserving her “privacy” than keeping her alive. The only reason they relented was because she was at that very minute undergoing brain surgery, and was incapable of giving consent. Then with the assistance of the Registrar at Santa Rosa Junior College, Tracy and I were able to get the information they needed—but not without an argument. “Why didn’t Sara give you a copy of her schedule in August when we asked for it?” What was I to answer? I don’t remember what I told them, but it wasn’t what I was thinking—that I was only important to her if I could help her cheat death.

Thursday update

Sara is doing fine. When visiting her today she really only wanted me to talk to her and flex her joints. Nothing going on medically. Vent stable, but she is taking larger breaths (always good.)

I told her about the stuff related to the next facility. It is going to be hard to find one for her.

Told her that her cat seemed fine this morning, so I didn't get him to the vet. After getting home and seeing the cat tonight - wish I had - he is really sick. Won't eat, barely drinking water, weak, left eye all swolen and yucky, won't jump up on the chair to even get to his food. That's a sick cat...

Told her about what I'm doing at work these days. What my crazy schedule is like - wake, drive, drop of michael, drive, work, drive, see her, drive home, work, sleep, wake, flop, sleep, repeat. I'm constantly on the phone either working on stuff for her care, working, or talking to my sweet boyfriend. I swear, if I didn't have him, and us doing so well right now, I'd go spinning off into space...

We talked about things her brother is doing, robotics, thoughts about where to live, stuff I've read about stroke rehab. I told her about getting her grandmother off to the airport, then coming home and missing her. (but still glad she flew home. Love Ya Sande! Come back soon...)

Started talking about her weekend. Asking her if she was looking forward to seeing Tracy and Denise, Mike and then Daniel. I know she is missing her friends something fierce. She and I talked about how hard this is for some of them to handle and it may take them a while. Also told her that she wouldn't be seeing her brother very much for the next few weeks - robotics build season...

She loves robotics, so I asked her if she wanted me to go to school with my laptop and webcam and record them working on the build. She answered a long yes. And she'll get to see her brother, happily milling larger metal pieces into smaller metal pieces. I'm sure it will make her feel good to see him happy.

All in all, she's doing pretty good. I crawl up on the end of her bed and put my legs up next to her, and put her legs up on me, and just talk to her. It is very similar to how we'd talk at home, on my bed. It is a lot of work to be the only verbal person in the conversation, but she is no less a part of it. She responds with yes and no, facial expressions and smiles, and her own emphasis on each. But I do miss hearing her sweet voice - and tire sometimes of hearing my own trucker sound... She seems to enjoy it no less.

I have got to go to sleep. I am in a lot of pain right now, but have to get some rest. My back and legs hurt from all the sitting and driving. I'll close this entry and try and go back to bed. My sweetie is being very patient with me tonight - with all my flopping around like a tuna. He is just looking out for me, trying to make me rest whenever I can.

Ready to move...

I got the word yesterday that they consider Sara ready to move to her next phase of care. Kaiser is looking for a step down unit for her - basically a ventilator managment subacute care facility. I, on the other hand, are looking for a stroke rehabilitation unit that will accept her and are willing to look at other stroke treatments for her.

I had a wonderful conversation with the medical director from the Alta Bates Stroke Unit. We're trying to see if there can be a spot there for Sara, and access to some of the advanced treatments that may help her. We are too soon to know any possibility, but I have made solid contact with program managers.

Sara's MediCAL card came in the mail the other day. When I took a copy to Kaiser they acted a little like I was handing them a yummy fried pork chop. I understand that medicine is a business and Kaiser is going to now try and get me to move her to a skilled nursing facility and then drop her from Kaiser. I have to stay on top of this to make sure they don't get the opportunity and keep Medi-CAL as her secondary insurance.

This is our medical system in operation... You can get really fine care, tip-top nursing - but only if you have insurance...and only if the insurance company doesn't drop you after starting to pay for fine care, and tip-top nursing. And, as I have recently found out, the benefits provided by the federal government and state are enough to keep you basically alive, but don't mess up the paperwork or forget to send something in on time...

I offered to switch places with Sara yesterday, after telling her all of this. She said "No." That should tell you something...

Subtle ventilator changes and no more collar!

Yesterday morning was Sara's ventilator weaning test. I met with Dr. Intensivist and he planned to reduce the ventilator support for her and see how she did.

The first try, when she was laying down, didn't go so well. Actually, she was fine, but he didn't like a couple of the numbers coming back from the vent. So, we decided to wait until she was up in the cardiac chair for another try.

After getting into the chair he reduced her support from 15 to 12. (with the goal being 6 before bringing her off the ventilator onto breathing totally on her own.) For about 45 minutes she was breathing a little fast and a little shallow, but not in any discomfort and her oxygen saturations were stable. Then, she took a deep breath and fell into a nice 18-22 breaths per minute rate with very good volumes and stabilized. She didn't do it herself - her body got the message that something had changed and adjusted accordingly. After watching over her for well over an hour, I called her stable enough for me to go to work. She was fine with that, as everything was ok. Her Grandma spent the day with her, watching movies and watching over her, so we could both be sure she was ok.

Dr. Intensivist wrote an order that when she goes back to bed they increase the pressure support back to 15 so she doesn't labor while trying to rest. She showed no indication of laboring breathing, even after going back to bed at 12 for over a half hour. The order now will be lower pressure support while upright, and higher when reclined, until her tidal volumes get higher while reclined. I guess it is like interval training for the lungs.

Still, multiple times yesterday I heard from the doctor that he wasn't sure she'd ever get off the vent. Seeing as how she is doing many things they said she'd never be able to do, my money is still on Sara...

Good News

So I had a Wonderful supprise when I went into Sara's room this afternoon. I opend the door, and her collar was off. Not just the front of it, but the whole thing. I asked the nurse, and she said that they had removed it yesterday while she was in bed, but put it on while in the cardiac chair. Today she had it off both in bed and in the chair. I asked Sara if she was more comfortable with the collar off. She gave me an immidiate "Yes". So this is a big improvement for her, at least comfort wise. I was a little too excited to explore the medical implications of what it means however.

Other then her collar comming off, I was able to figure out what book she wants me to read next. It took a while though, because she couldn't figure out how to spell it. (I dont really know either, but i was able to figure out by why it looked like it sounded..... like.... er....) I basically asked if I could take a guess at the title, and I got it right. Its another J.R.R Tolkien book. (Hence the hard to spell name) "The Silmarillion" Is what she was trying for. So I'll start reading that to her next time I'm up there hopefully.

Because her collar was off, she was able to smile a lot. So that was nice. I just talked to her for a few hours and rubbed lotion into her feet. It was a short visit but it was a good one. She was tired from being up in the cardiac chair when I left. So hopefully She will sleep well.

~Daniel H.

Sara smiles for her daddy!

Sara and Tracy shared some smiles over an article called "What's Your Doggie Made Of?" in People Magazine. Example: "Chinese shar-pei, pug, chow chow--We'd Call It a ... "Chug Chow.". She also endured several of his corny jokes--and even smiled at the punch lines!

We looked at the "Best Dressed" article (her favorites were J Lo and Halle Berry), and "The Year in Babies".

Her new letter board is much easier to work with--the contrast is better and the letters easier to see. The accompanying whiteboard helps to keep track and verify what she has spelled, too.

Stormy Friday

what a blustery day...raining sidewise...reminds me of Alaska...

Sara stayed inside today. LOL...of course she did...

She had a real easy day. I talked with her doctors this morning and discussed her care, plan for the next few days, etc. We all agreed to stop messing with the ventilator and let her build up some strength.

Dr. Intensivist and I discussed how and when to do pressure support/ventilator changes. I explained that it wasn't just that I wanted to be there for me to watch...I need to be there because it scares the hell out of Sara and she wants me there. He totally understood and put himself in my place as a parent and said he wouldn't want his son to go through that without him, either.

So - Monday I will be at the hospital when they round in the morning, and they are going to do a ventilator reduction and breathing test. I'll have a chance to prepare her for it (like not springing it on her-which she really dislikes) and calm her during. If you've ever seen Sara scared during this, you know that she locks onto my eyes and listens to my voice. She KNOWS that I won't get all wound up unless there is good reason to be, so she relaxes and calms down. We've been through some exercise induced asthma attacks and she knows to just listen to my voice, trust me, and breath like I tell her. We'll test to see if she can do it now. My bet is that she can.

Now - that being said - this is only going to be a 2 to 5 point reduction in her ventilator pressure support. That can FEEL like a lot to her, but still plenty of support. She is on a relatively high level of vent pressure support (15lbs/H20) and he'd like to see if she can tolerate 13lbs or even 10lbs. She did not tolerate 13lbs the other day, but that was within 24 hours of starting to breathe on her own, too. We agreed that she's still pretty weak in the chest muscles and needs a chance to work back. Unfortunately, coughing is rough on her, but has been helping her build up more breath strength and muscle tone in the chest.

In the interim, she will be visited by her father and stepmom - Tracy and Denise - and her boyfriend Daniel. I'll try and go up if my sore throat lets up. I have strep throat and am probably not still contagious, but feeling like gutter crud. (I bathed in alcohol gel and wore a mask when seeing Sara yesterday...and didn't go today or day before yesterday.) Luckily, I haven't gotten anybody else sick around me, as i've been VERY careful.

So all is as well as can be - resting happening all around - working not to get any worse - letting her gather strength and heal. Monday will start the first full week of the New Year..and the first weekly goal.

Pushing the vent

I couldn't make it up yesterday to see Sara, so my sweetheart Don went by. I had a training session to give over the Internet and a project depending on it.

Don has this great way about him. Although he is a well-spoken, educated man he can be a big warm teddy bear. He's been around Sara, indirectly, for the past 3 years. He has never been interested, nor have I for that matter, been interested in him participating in the raising of my children. But he is a significant part of my life, as are my children, so paths do cross. Invariably, there is laughter. Don has this way of taking his easy manner, and quick wit, and poking fun at and with about anybody. It is no less the case with my kids.

So, when he gets around Michael they start playing two big dudes crashing into each other. Each one nudging and taunting the other the way that buddies do.

When he gets around Sara they trade silliness and poking fun at or pulling my leg. But he can always make her laugh, even when she doesn't want to.

The fact that he is able to make her laugh now, about anything and everything, is truly great. I know that when I can't get there he will go see her for me, and give her a familiar face to grin at. I'm sure that when she is again able to talk that I will hear all about it. But for now, it makes her smile and that's all that matters.

I found out today that they changed her over from a ventilation rate to spontaneous ventilation again = so she is breathing on her own, and triggering the ventilator. She is on pressure support, and it is actually fairly minimal. She went to spontaneous yesterday after being on full support since Christmas Day. But today, for some reason, the doctors decided to try and take her off the ventilator. Well, it didn't work. Too much too fast. I guess they saw how well she tolerated going back to triggering the ventilator herself and decided after seeing her push the ventilator at a good rate that she was ready. Well, she was clearly not.

I have a problem with this, as they have done a vent off test yet again without me there. I have told them that I want to be there. Sara has blinked agreement that she wants me there. It is written in her chart. And still they pull her off, watch her struggle to breathe, and put her back on. I am not there to encourage her, comfort her, reassure her afterwards. It is always apparent to me when they have been monkeying with her breathing, as she is drenched with sweat from working so hard, and gets scared when ever she even seems to have an issue starting.

I'm calling her main doctors tomorrow to see if they can get it through their heads that I am serious that I want to be there and not to try another vent off without me there. I also want to check when they are going to start working on getting the collar off her. it has been 9 weeks now. So, we'll see after tomorrow what the (coordinated) plan is for the next week...

As for the special for today - her Grandmother spent a few hours with her. They watched Stargate SG1 and just hung out. Sara really seems to enjoy it. I'll let Sande tell you all about it...

Into the New Year

I went up to see Sara yesterday. She was both in good shape and good spirits. Don and I spent some time with her, joking and smiling about various goofy things.

I told her that I was glad that 2007 was coming to a close. Although the whole year had been going fairly well, the way it ended (with her accident, et al...) left us on the downward side. I told her how proud I was of her, for how she had grown and lived in this past year - good job, handling her own finances, starting school, improving her relationship with her brother. I told her that I was amazed by her as a person, able to come back so far so quickly from something so dire. I told her that we would keep working to help her and that the new year meant a new start.

I told her that starting in 2008 we were going to start setting weekly goals - ones that we would decide on together and work towards each week. She answered yes. She'd continue her physical therapy, and we continue working on communication and speech therapy. If her goal was to "wake up" her brain, then this was how we were going to do it. I told her that amazing things have happened to people, and who knows if she will be one of them. It will take her working. She's ready. She's been enjoying the therapy with Rachel, and has shown improvement.


I spent most of the day with her today. We cuddled, and I talked to her. She preferred to just listen to me talk about things familiar to her outside fo the hospital. And I rubbed lotion into her hands and feet, then gave her a whole body rub. She was in heaven. Then we curled up on her bed and took a nap. Well, until MY legs started to cramp. Then I got up and futzed around her room and cleaned until she started grinding her teeth at me. Taking my cue, I told her that she should go back to sleep and I was going to venture home, to which she answered yes.

You can see so much expression in her face now. Her forehead, cheeks, lips and chin are all moving, expressing. OH...and when they suctioned her this afternoon...she localized to it, and to painful stimuli. That is significant, as she has been unable to localize to pain since her stroke.

There are two postures for reaction, localization and decerebration. Localization is you ball up your fist and pull your arms in. Decerebration is you extend away from the pain, pushing arms and legs out. And then there is no reaction at all - where stimuli yields no reaction at all. During her stroke, she stopped localizing and became decerebrate - and that showed it was damaging her brain stem. By the time they took her down to surgery at Davis, she flexed completely away. This is what lead doctors to believe that her brain stem was totally gone.

Well, now she's localizing, after two months of no reaction at all. And THAT is significant. I told her that I was thrilled - I hadn't been looking for any changes. Just letting her cruise and rest - but her brainstem is showing us that stuff is going on the right direction inside her brain. I'll take it.

Welcome to 2008. Welcome to uncharted territory and unknown possibilities for Sara, and for us all.