Thursday update...

Sara did well today. She was awake and alert. She participated with the speech therapist and went through physical therapy and occupational therapy evaluations. They are all looking for the same thing: what is Sara's starting point.

When working with the speech therapist, she was able to work out with them a set "yes", "no", "i don't know", and "i need attention" signals. The last one is just for the nurses, so she can indicate when something hurts, etc.

I am glad she finally engaged one of the therapists. I say finally...jeez mom...give the girl a chance here... They (physical medicine and rehab) mentioned in our meeting that any time they had tried to engage her that she did not participate. I suggested that maybe they start telling the girl WHY they are there, and maybe she'll perk up - instead of assuming you are another person in to poke on her...

Also...I called the sub-acute care facility in Healdsburg. Found out that they may not continue as a Kaiser contracted facility. Something about differences in patient care/problems. Hey...that was enough for me to hear. I also checked the facility out on the web and it is primarily a nursing home. Nope...

I got all excited about having her closer and didn't look at where the best AND closest place would be for her...

So, I looked at the list again...then I saw it...the perfect next step for her - Alta Bates Medical Center in Berkeley. Although I really want her closer, an hour closer than Sacramento it is. AND, it is one of the best facilities anywhere. They are a regional rehabilitation center, regional stroke center. And I have been in that hospital for classes and it is very nice.

Mind you...I am VERY HAPPY with the care she has gotten at Kaiser. Dr. Neurosurgery and Dr. Neurology have been outstanding to her and her family. The nursing is so different, so attentive and relaxed and they really try to build a nurturing rapport with the patient. We are very fortunate to have been transferred to their program from UC Davis and she has done very well there. But, that is an ICU bed and Sara doesn't need that level of care anymore. (WooHoo!!!) I know from that scary night last month, having a very sick child and no ICU bed to take her was a terrifying experience. If Davis had not accepted her she would have died that morning... So, she requires sub-acute on her way to rehab...and someone else may need the outstanding care of the Kaiser Neurosurgery ICU. Nobody there reads the blog, so you know I am not just fluffing somebody's scrubs...

The UCDavis nurses though are awesome, too. They helped hold together not only Sara, but me, too. And they had to care for and look out for her, while not getting into that whole AD political mess that stirred up... They watched out for her on the very rare occasion that I wasn't there for a few hours those first few weeks. Just very different "vibe" to the different NSICUs.

I worked all day today. Although I felt pretty guilty not going up there, it felt good to be truly productive and get some things fixed. That's what i've always done..fix things. Strange irony that I can't fix my own precious daughter... But i've been taking on more work hours and I know Michael feels better seeing me do so.

Her cat, Dusty, expressed his extreme displeasure with me late lastnight. Michael theorizes that the cat thinks I am keeping him from Sara or Sara from him. The last time he saw her I took him up to the room, and i'm sure he's smelled her on me since then. Anyway, good thing he's an old cat missing his girl or he would have been an airborn cat missing terra firma...(I wouldn't really throw the cat...beyond a game we call "fly kitty"*...but i'd sure tell him I would...

*fly kitty: ask cat if he wants to "fly kitty". he'll mrow and walk over if he does. pick the cat up, about 3 feet away from the couch or a bed, say "fly kitty" and launch him into a gentle arch onto soft device. repeat until cat walks off... (sara started this game with him when she was 5 years old and he was about 3 months)

Wednesday Update

Sara had friends go up to the hospital yesterday. Victoria, Dave and Mike Jeffries went up and spent a little time with her.

Yesterday she was a bit tired. Didn't want to deal with nurses/therapists/etc. Her nurse did tell me that she stretched in the morning when she woke up and moved both legs and her left arm, however slightly.

She basically refused to work with the speech therapists yesterday. I asked the nurse if anybody told her what was going on (as in, Hey Sara, you get to start some therapy to help you recover from this)...she didn't know. Hmm...telling Sara what is going on might be a good way to get all this started...

I ran errands yesterday afternoon regarding her accident. Picked up the accident report, some records, went to go photograph the car (but they had already sold and crushed it for scrap metal - good old solid metal american car...). I went to the accident site and took some pictures. I spent a lot of time there, actually. I found myself sitting in the spot I figured she'd been trapped at...for a long time...then for no reason I started picking up the glass from her windows. I think i'll make something from it. it seems a shame to have the grass take over and heal the spot she was at while she is still in the hospital... I guess life, and weeds, really do go on...

Other than that...not much on the hospital front. She rested well last night. I checked in this morning and she is communicating and very engaged.

...adjustments...

Just so you know...the living situation will stay the same. Sara is not going to be in any position to come home any time soon, so we'll hold tight and give her time to heal before making any changes on the home front.

Nanci asked me last night if Sara couldn't come home soon would I want to move...I thought about it and it was an easy no... I just got a little ahead of myself.

Anyway - yes, her Neurologist gave the go ahead to start looking for a sub-acute facility for her. Mainly because she is ventilator dependent still and needs a facility and staff that can adequately handle that. He also made an adjustment to her neuro checks. Instead of every hour 24x7, they are every 2hrs during the day shift, and every 4 hrs at night. She'll be able to start getting some rest.

Also, he is going to put her on Prozac. Before getting all up in arms about it...i will offer an explanation. It helps in cases like these two ways: 1) an anti-depressant certainly can't hurt when someone has had their entire life turned upside down and is now quadraplegic, and 2) it helps head injury patients be more engaged/awake... And, if they are going to start getting her to communicate with them better, and benefit from ANY therapy, she has to be more of both...

Physical medicine is going to start therapy with her. Working her joints, especially her right hand and jaw, as those are tight. The nursing staff (starting with Nurse-Carlo at UCD) have been moving and flexing her joints a couple of times a day. The collar on her neck has prevented any jaw action. Dr. Neuro gave the ok to pull the front off the collar when she is flat, and work her jaw to open her mouth.

The collar - will be on for at least another 4 weeks. Although the break in C1 is "fairly minor" according to her doc, the ligaments and soft structures were hammered pretty hard and have to have a chance to heal. They will test remove it in another 4 weeks, and xray for position. If her vertabrae are allowed to move too much, they'll put the collar back on (as the ligaments are too loose and still need to heal.)

I told Sara that we needed her to communicate easily with everyone, not just me. She and I already have a close bond, and a lot of unspoken communication, but hospital staff need to feel like they are communicating well with her. So, to that end, she and I worked together this afternoon and blinks are much easier for her, quicker, don't fatique her as much, so we are changing to that. blink once for yes...nothing for no (for now). When she couldn't blink, or keep her eyes open at all, the only way was to hold open her lids and have her move eyes up and down. She's progressed to the point that her eyes are open most of the time now when she's awake. Hopefully the staff will find this easier and work with her more.

and...she smiled...I couldn't believe it...I said something really funny...and she smiled at me... I don't care what anybody says...that was worth every sleepless night since this started...my baby girl smiled at me...

(then I got all goo goo on her and she rolled her eyes...see? some things never change...)

Went to the hospital today.

As some of you may know, I've not been at the hospital to see Sara in a while. Well, I decided not to go to school today so I could go visit her with mom. I've not really been talking a whole lot but it has been nice to just be near her. Mom went to go to a meeting with a few people to discuss the plan of action and I fell asleep in her bed next to her. The nap was nice and despite the fact that the fan kept blowing cold air on my back I slept pretty well (for about an hour). Mom came back right after my nap and we're talking about possibly moving her to Headsburg (Back to Sonoma County, which is a lot easier to get to than the two hour drive to Sacramento), which would be nice. We're also still trying to figure out our living situation. I don't mind moving to a new house too much, however I'd only really like to move once and I've told Mom this. Hopefully she'll take this into account, but she doesn't have to. I just hope that whatever we do is the right decision for Sara, and for us as a family.

Well, we just (and I mean before I finished writing this post even) decided that blinking is easier for Sara, so instead of moving her eyes, she'll blink once for yes and do nothing for no. This is easier for her because blinking is easier in general (this I'm not sure why it is, but it is). This is good, so with any luck she'll be able to communicate more.

I just loooked up Healdsburg on Google Maps -- It's about 20mi from our house. If she does get to go to the subacute care center there, it'll be much, much better for all of us, so we can visit her, and she'll be home in sonoma county.

I really hope, for everybody's sake, that she can make a full recovery and get back to living her life. She's an amazing person, and I really hope that the world can get to know her as the person she once was.

Resting day...

Sara had a very eventful weekend. I thought it might be good to give her a nice quiet day to rest.

She did. I called both the day and night shift nurses to check in and they both told me that she's doing very well. She was in the cardiac chair today and tolerated it well. Her oral secretions are down a bit, which is good. No fever.

She's in bed now watching TV. I told her that her brother and I will be up there tomorrow.

Tomorrow I have a meeting scheduled with her doctors, the social workers, physical medicine & rehab and a discharge planner. We are going to discuss planning for her next few steps and make sure we're all on the same page for her care. Initial indication, since she is still ventilator dependent, is that she needs to go to a sub-acute care facility. It is one step above nursing home, one below hospital, but with no rehabilitation. But, before I get ahead of myself, that was just in discussion with social work with what they thought the next step may be.

I went to SRJC and got her student records. I also went to Santa Rosa Memorial and ordered a copy of her medical records. I've got quite the library of Sara-info growing. Her medical record from UC Davis is going to be huge...

I went by Pecoraro's Martial Arts on the way home from work today. I had not been in their new facility. Very nice. The Pecoraro family (John, Adam and Carol) are such amazing people. They've helped me with Michael before he went to Hanna (gave him a responsibility talk and held him to it), mentored Sara in life and martial arts for years, watched our family grow and change. And now they, and the entire Pecoraro's family (instructors, students), are standing in support of Sara. They've asked me to communicate to Sara their collective love, support and belief in her - I will do that tomorrow when I see her. They have something very special planned to honor Sara. I will let you all know about it after the fact, as it is something very personal for her.

I went and looked at a 4br single story house today. Not going to happen. The place was nice enough but it wouldn't fit. Basically I have to decide if Mike and I stay here until she is nearing being able to come home or visit, or move to a single story place and gradually setup for her, or move to a two bedroom place and save some money until she can come home or visit and then move. I guess the planning tomorrow will tell me more to go with. Its hard not knowing what to do, or what not to do.

I spent some time this evening looking at communications systems/software for Sara. It is the worst thing not being able to "talk" to people at all. That is what makes her saddest, I am sure. I talked to Kaiser today about what we could do about that and basically I have to apply for SSI and MediCAL, etc. for her and see what they will pay for. Meanwhile, I'll try and do better working with her and the letter board. It is literally the blind leading the blind here. I can't believe, however, that the second we knew she was locked-in that they weren't working with her. I guess in that regard I should have gotten military on them...but didn't. Actually, she probably couldn't have tolerated even trying to learn anything until recently. I do have to remember that although we've known for a month that she was locked-in, it has only been in the last couple of week or so that she has not had any major issues and been relatively stable.

You realize, as soon as we give this girl a way to "talk" that we'll never hear the end of it... :)

Ah...I can't wait... my world is way too quiet without Sara yammering away about something or the other...I look forward to hearing what she has to say after all of this...

A visit with friends

Today was an eventful day. But in a good way. Mike, Sara's dad was at the hospital in the morning, and I arrived in early afternoon with a handful of Sara's friends in tow(Andy, Andrew, Kim, and Sylvie). Today, Sara's room was filled with laughter and sillyness. More decorations were put up in the form of a wonderful painting that Sylvie (sorry if i spelled that wrong) made, and Halloween themed rubber ducks from kim. Because Andy was there, The Game was lost many times. Sara actually laughed (or seemed to, as close as we could figure) at the notion of it. (for those of you that don't know what I'm talking about, don't worry about it.) We took turns visiting Sara in small groups. Mostly 2 or 3 at a time. Before we left, we all went in to her room at once to say good bye. We could tell that she was tired, but she didn't want us to leave. We stayed for a few minutes before we finally left. Mike stayed behind to make sure that she calmed down and got to sleep ok. By the looks of it, She enjoyed today's visit quite a bit.

~Daniel H.

The Circle of Friends

Sara is a very lucky woman...to have the friends she has. I know it has been hard on both them and her to not see each other. We needed to keep the stimulation to a minimum while she was in such bad condition, so I limited it to immediate family and Daniel. (actually..that was the policy at UC Davis...Kaiser has an open ICU policy...family oks visitors)

So..now that she is doing so well she needs her friends back, and they need her back.

We got together tonight to talk about her, her condition, answer any questions, tell them what to expect, what they'll see, etc. We talked about how she communicates, what she can feel, where they can touch her, etc. We talked about being themselves with her...if they want to cry, cry...if they want to talk aobut how scared they were/are, talk about it...if they want to crack jokes, crack jokes. The Sara they love is inside that pretty girl on the bed. She wants to get out as much as they want her to.

They are a real great bunch of people. I want to call them kids, but they aren't. Well, they are to me... But they are just very genuine people who care about her and each other. I am so glad she has that.

We talked about the next phase being a very long, often tedious road, for recovery. They know. They all seemed pretty well accepting of where she is now and what happens next. They understand her physical state. And I told them about her mental state.

She spelled her first word with the letter board today. She spelled sad. Sad. I looked at her and she started to cry, so I started to cry. We had a nice boo hoo about being sad about where she is, missing her kitty, missing her friends, sad she's so hurt, sad about the holidays started...lots of stuff she's sad about. I've been so fixated on getting her patched up from the physical issues that I didn't head off the mental ones. I mean, intrinsically I knew she was going to need to express her feelings, but we still don't have an easy vehicle for that yet.

Communication is going to be a big key for her. It's bad enough she's locked inside her body...but right now she's also locked inside her mind. There is only so much we can do with yes/no answers and someone who tires so quickly. I also found out that the nursing staff sometimes reverses the yes/no by accident...so I have to straighten it back out. Down is yes, up is no. Down is easier for her right now... But, I need to get somebody to tell me what I either need to do for her myself, or get someone who is trained to help her communicate via technology...and soon.

I totally understood them not wanting to start any kind of therapy, rehab stuff with her until after she was stable. Well, now she's stable, so lets get with it. And while we start that, she can be reconnecting with her social group and start looking ahead to the next steps.

(btw...I figured out that she was just super tired today. they are waking her up once an hour vor vitals checks...she's beat. they did a respirator off test yesterday, too, which didn't go well and beats her up. After letting her get a two and a half hour nap, and then working with her, she was fine. She was still tired, though and only stayed up about a half hour with me. Totally understandable. I'm going to ask the doctors on Monday to change her neuro check schedule to every 3 hours, so she can rest.

What do I do?...

I started off my day with a ringing phone, news of Sara, and driving way too fast for my own good. My heart rate still hasn't come down, but now for a different reason.

I am in a bit of hell right now. Feels like a panic attack and I am definately stressed.

I don't know what I'm going to do. I try to go back to work, and something happens. While I'm at work, I think about her and feel guilty that I'm not with her, watching over her, helping care for her. I can't work...I need to take care of her...be there for her...ensure she gets what she needs. But I can't NOT work...I'm a single parent with a teenage son and he worries about what is going to happen to us...

I was on my laptop until about 4am looking up rehabilitation modalities, stroke research, rehab hospitals for locked-in patients, rehab for ventilator dependence...I was even looking up hospital beds and equipment...what if the best care for her is in Chicago, or Detroit (Detroit has the #1 brain researcher specializing in Locked-In stroke recovery/Chicago has the #1 stroke recovery hospital in the nation) She's 19 years old. A whole world of life ahead of her. She can't just go to a nursing home with 80 year old end of life stroke survivors...

I just want to sell everything. I so don't care about "stuff". I just have to get her better, and the best chance of recovery/rehabilitation. I'll look at grants, whatever. Hey, maybe that book by that goofy guy with all the question marks on his pajamas...Maybe I can sell and organ...UC Davis wanted some...

I've been sitting here kicking myself. I inherited some money when my grandmother died over 10 years ago --but I was so stupid and bought a business. I didn't know what I was doing and lost my ass. If I had listened to my Uncle Sim I wouldn't have done it and I would have saved that money, or invested it. I could be taking better care of her, and Michael for that matter. But I was stupid and now I'm paying for it...and she's paying for it.

Don, honey, play the lottery for me? I need a sugar daddy to take care of me so I can take care of my baby girl. (I'll even let you call me your "ho" and slap me around a little bit... ) LOL

[I know...sometimes I make inappropriate jokes sometimes...but right now I literally want to scream and break stuff...i'm so frustrated...so...this is the alternative...]

Ok, so Sara Seems to be Ok now. The doctors are still going to look over the scans though.

CT results came back. They show no change. But since her eyes are deveating, there is obviously some change. Her Neuro surgeon and Her Neurologist are being called so they can look over whats going on( they are the heads of their respective departments). It is apprently their day off today, so somebody else was reviewing it, But they are being called in anyway.

Something's up

I just got a call from Kristina. Sara's father Tracy has been there this morning and noticed that her eyes were having issuse. She hasn't been tracking people and when she tries to move her eyes, one goes up and the other goes to the side. The nurse working with her right now tried to tell tracy that here eyse had been devated for a while (this nurse has not worked with sara before). But they havent been like this before. At any rate, The neruo surgeon has been called and Sara is in emergency CT right now. Krisina is on her way up to the hopsital. I'll give updates when I get them.

~Daniel H.

They tested to see if Sara was ready to breath on her own today. She isn't quite yet. Other then that, nothing new clinicly. I didn't get to the hospital untill late afternoon today. When I got there she was sleeping. I hung out in her room and watched her sleep and over reacted to variations in her respiration. The nurse and the respiratiory guy both assured me that they were within normal limits, so I contented myself with rubbing her arms. She woke up after they shifted her position. After that I read to her untill they shifted her again. Her hands and some other parts of her body were drying out so I used some lotion on her hands and arms. I also hung up another 50 cranes in her room. I'm up to 150 now.

~Daniel H.

Thanksgiving Day update...

I'm sitting her across the room from my sleeping daughter. She is doing fine today. Had a nice visit from Nanci Hattem (Daniel's mother) and a call from Daniel himself. It calmed her and she has since drifted off into a nice rest.

As i'm sitting here my mind starts to drift to what day it is - Thanksgiving Day. I know it is all about pilgrims giving thanks for a bountiful harvest and expressing gratitude to the Native Indians for teaching them how to grow the food necessary to survive here. It was the sharing of cultures and abilities. It was a time that people brought family and friends, old and new, together and share a special meal. And, it was an expression of hope.

On the surface it may seem like I don't have much to be thankful for. Many of you know the trials and pains that have crossed the path of me and my family. Sometimes it makes a person want to throw up their hands to God and yell "Now what?!"

But, in my heart and in my thought lives hope. It always has...

This year, as I sit across from my sleeping daughter, I have so much more to add to what I am thankful for.

I am most thankful that she is alive. So many times she shouldn't have lived through this...but she has fought hard and is alive. And that means hope is too.

I am thankful nobody else was hurt in the accident. It would poison part of her spirit to know that she hurt someone else.

I am thankful people stopped, and helped, and did what they could to save her. They kept the fire from spreading, they broke windows so she could breathe and they could get to her.

I am thankful that friends love her and her brother as they do. They gathered and supported each other, sent her good strong loving thoughts, held him and cried. The ones who were strong enough to handle what was going on helped support the ones that were not.

I am thankful to the outpouring of help and support for our family, from friends, family, and strangers alike. The hardest thing for me to do personally is ask for, or accept, generosity from others. I like to be the one who is giving and helping. I have had to put that feeling aside. And, in doing so, I have seen just how loving and amazing other people can truly be.

I am thankful for Daniel Hattem, for loving my Sara as only he can. They have an amazing relationship. It is the kind of relationship that adults like me look at and admire for its strength, tenderness, and communication. His love for her is a healing soup - warm and nourishing. I know he misses her deeply and she misses him. When they are together now one can feel the energy between them, enveloping them, and for a few moments they are at ease and this world melts away...

I am thankful to Nanci and Dave Hattem for their love and devotion to their son, for their strong friendship and for their genuine caring for Sara and her welfare. And for so much more I could never begin to express...

I am thankful to Sande Baker, Sara's grandmother, for dropping everything and getting on a plane. She came to be near her granddaughter, but came to care for her grandson. She realized before I even did, that Michael's needs might not be met while I became consummed by Sara's care. She never once faulted me for it. She just jumped in and took care of Michael, Sara's beloved cat Dusty, our dogs, the house, anything that needed to be done. Oh...and she spoiled Michael. I'm not especially thankful for his newfound taste for beef jerky, or real maple syrup, or crunchy peanut butter or orange juice with the pulp in it or white bread sandwiches. But I am thankful that the two of them connected and share stronger bond, even when they gang up against me... :) in jest...of course...

I am thankful for my boyfriend Don Price - for lots of reasons. He took a step back out of my immediate picture so that I could concentrate on Sara and interact with her father regarding her care without distraction. Those first few days were incredibly tough to do without him holding me up - but I could feel him there as if he was. And, when the first 34+ hours were over, and I hadn't slept, I went to his house. He got me fed, showered and into bed. Then he sat up while I slept, with my cell phone in his lap, listening in case the hospital called. It was only because of this that I allowed myself to rest at all.. and he has done that any time I needed ever since...

I am thankful to my Uncle Sim and my Father. They are my only remaining family, my only link to my own history. Time and events have left us somewhat distanced - but one phone call ended that... They have both, in their own ways, given me a nice shot in each arm. Reminded me what kind of stock I come from, and where she gets some of her strength. Hearing each of them send love for Sara, Michael and I has made a world of difference for me.

...to be continued...Sara is awake and we are going to watch Jungle Book. :)~

A visit from the big black man...and updated website.

...that would be my boyfriend, Don.

I could not make it up today, as I had to get some work done. My customers have been so very patient with me - but I had to get back to work. She's stable and doing well, so I thought it might be ok to let her have a day without anybody coming up. Don knew how much that bothered me, so the sweetheart went to see my girl since I had to work.

I'll let him update on his visit.

So I dove into client issues today, and into the updated website this evening. Please visit www.SarasCourage.org for up-to-date announcements, information on stroke and locked-in syndrome, pictures of Sara, original artwork and photography by Sara, and ways to help in her recovery. This blog is now also a link off of the main site.

The site will continue to expand, and add ways to communicate with Sara through her recovery.

Huge thanks to her step-dad Mike Bartholomew for registering the domain, arranging all the hosting we would every need, and getting the base site built. And, especially for tolerating me when I went all femonster estrozilla and changed the entire site...

A visit on the way out of town...

Daniel and his father Dave stopped by the hospital on their way to Grass Valley for Thanksgiving. They stopped by the hospital to spend some time with Sara.

Daniel told me that he read to her and she seemed to be enjoying listening. He told me that she was communicating well and was working on her blinking. (I told Sara that she needs to work on blinking as it will make using the alphabet board easier...moving the eyes up and down takes a LOT more work.)

All in all he said she seems to be doing pretty well and did not seem uncomfortable following yesterdays surgery.

I asked her yesterday if she wanted to start seeing her friends, and she gave me a big YES. So, we will start making arrangements for other people to get a chance to see her. Now since her acute medical issues are stable, its important to reconnect her with her world. I know she has missed her friends and mentors considerably.

If you are going out of town to spend Thanksgiving with family - please Drive Safe!

In search of...

I am going to have to move. Our current place is a multi-story townhouse in Rohnert Park (I admit...I like stairs)... Pretty obvious i'll never be able to bring her home to that...

So, I've started looking for single story house in Rohnert Park or Cotati. I want to keep the kids in the same area they've grown up in...and this is our home. Any place we get I will have to modify somewhat for wheelchair access(like changing out flooring and putting in ramps). In town, edge of town...no matter...

So...if you are driving around, see any For Rent signs on a single story house, please let me know. Thanks.

Tuesday update...

Sara had a real good night and is up in a cardiac chair today. Her nurse said she's back to being able to indicate No (eyes up) as well as Yes (eyes down). When the pressure builds up in her head she loses the ability to move her eyes up, so this is a real good thing.

Her nurse said she's been awake and alert most of the day and will be moving back to the bed shortly. I am working today, so I asked the nurse to put the phone to her so she could hear me. I asked her to rest, take a nap, and heal. Her operation went very well, she is doing good, and she needs to rest up for the next phase.

I told her that her boyfriend Daniel would be at the hospital later this afternoon to see her. She needs to rest before then, so that she can interact with him while he is there. I'm sure that will do the trick and get her to rest. I know how much she looks forward to his visits...and how much they both get out of them.

I slept so well last night. I think knowing that surgery should be her last really put me at ease. I was very worried about her under general anesthesia, but she seems to have faired well. Now its time for all of us to rest up for the next phase - helping her find her way out of Locked-In Syndrome...

Shunt Status

Sara had her Shunt surgery this evening with no complications. Her vitals are stable and she has woken up from the general anesthesia and has been alert and responsive. Having just undergone a major surgery however, she is going to be worn out for a while.

On an interesting clinical note: Her new shunt is completely internal and actually snakes down through her body and drains into her stomach which apparently can handle the cereberal fluids just fine. I don't know how these fluids are disposed of normally, but to me, that seems pretty nifty that they can do that.

~Daniel H.

Like a couple of bald eagles...

Sara is getting her permanent shunt surgery today. The had an opening in the schedule so Dr. Neurosurgeon put her on the schedule.

Well...she has not liked that they cut her hair for the original shunt...and didn't want her hair cut for this one...but they have to shave her head for this operation. So, I asked her if I could cut her hair first, and save it in locks. She said yes. But was still hesitant.

So...I told her I know she didn't want to do this. I wouldn't want to lose my hair either...

Then...I don't know exactly what i was thinking...I asked her if she wanted me to shave my head, too. Since she had to lose her hair and didn't want to...i'd lose my hair, too. Her eyes flew down so fast i thought she had a seizure! That is so Sara. That was an emphatic YES if I've seen any answer so far...

So...after i clipped her hair off so we could save it, I asked a nurse to shave my head. We made a ponytail and clipped it off and have saved it to donate to Locks of Love (for kids that need wigs).

I asked her after it was done if she thought it was funny, which she answered Yes, A Lot. I asked her if she had the silliest mom ever, which she also answered Yes to. I love that girl so much. I'd shave my dog for her... :) Heck...I'd shave her cat!

Have a good laugh...warning: It's not a pretty sight...

Quiet sunday...

I've checked on her a couple of times today. Her father Tracy and StepMom Denise went up to visit with her today. I've been hanging out today with Michael and trying to get some work done. (actually, I have been getting some work done...)

I talked to Tracy and they had a nice visit. Denise got a chance to interact with Sara for the first time. And they played CDs for Sara while they were there.

Talked to her Nurse-Kyong this evening. She seems to be moving towards her normal sleep/wake schedule. Sara typically would be awake until midnight, be sleepy/groggy in the morning, and pick up in the late morning. (typical teenager sleep schedule) She seems to be getting close to that. I think what got the ICU crew was that she was not very responsive in the mornings and thinking that may be a problem. Well, i've lived with the girl and that is totally normal before noon. ;)

Sara was watching discovery channel this evening and listening to CDs. Vitals stable, labs are coming back clear for any new infections, breathing is good. She's spending more time with her eyes open in the afternoon and evening. Heck...even the burn on the side of her head from the fire is healed. To look at her she looks fine - except for the tube in her neck, aspen collar and a couple of IVs.

I had a comment from someone today (via chat) that her face looked a little "blank" on the website. Let me explain. Her facial muscles are affected too. She can open and close her mouth, move her tongue, open and close her eyes, but no other emotions or expressions will be evident until maybe later. So, she appears to have a blank, open stare. Make no mistake, she's there and there is nothing blank looking back at you. Maybe one of these days i'll get the webcam setup and catch her communicating with me, so you guys can see how she "talks" right now. I've tried it...and it is exhausting. but it is all she has for now - until Mom figures out how to work with her on the letter board.

Sweet Face...

Results of CT

I sat down for a long time with the Neurologist on her case. He and I went over her CT in detail. He is a very patient doctor, and I appreciate his calm manner and honesty.

There are no new problems. The current shunt is doing its job well and the pockets of excess cerebrial spinal fluid are draining well. The plan will be to place a permanent shunt for her sometime in the next couple of weeks. The Neurosurgeon on her case will discuss timing and what that entails with me later.

The Neurologist showed me the different layers of her brain, where the shunt currently is. We traced the start of her middle brain. He showed me what healthy brain tissue looked like and what fluid looked like and what damaged brain looks like. He showed me what a stroke looks like on one side compared to another side. He quietly took me around the brain, showing me structures, arteries, fluid pockets, bone.

Then he led me to the part of her brain that is damaged. He showed me just how much damage and where it was. My heart actually sank. He said it is amazing that she is alive at all. It was no small stroke and it wasn't just isolated to the pons area of the middle brain. He showed me where another part of her brain was starved for oxygen as a result of that stroke. He said she was robbed of oxygen for a very long time in parts.

....Oh baby girl...you've been so beat up. Its so unfair. You are just 19 years old and he is showing me just how bad your poor brain has been thrashed...

After he finished showing me the results of her scan I sat for a long minute. The only question that could come to mind was "Is there anything at all we can do for her?" I have been real good about not researching every cockamamie supposed help for stroke and brain injuries. But now, I feel the crazy welling up and I have to keep myself in check.

I would not want his job today. "No. There is nothing we can do for her. It is mother nature and her nature now." Hearing it from him, with his patient explanation, calm, Sara-focused care that I have observed since she came here...I trust what he says. I don't accept it. But I do trust it. There is a difference.

We talked longer. We talked about therapy, other interventions, other non-standard options. He encouraged me to research and try anything we felt was reasonable. We discussed how therapy is only beneficial if she can participate. And, she has to be able to show specific benefit over a specific time for insurance to pay for it. He told me that frequently people will go out of pocket for therapy for their loved one to get them to a state that other therapies would be warranted and paid for by insurance. He said that although she does open her eyes, wiggle her toes, move her mouth, to be realistic and patient. Nothing is going to happen overnight and she is still so very damaged - still so close to the event that has left her in this state - its going to take time, a LOT of time, for any changes. A lot of time for her to get back into a regular sleep wake cycle for that matter..which is very important for recovery, too.

Her state - about as dependent on others for care as you can be. She is ventilator dependent and requires multiple people to care for her. That is where this stroke has left her...

I can almost see her jumping around the living room showing me some kick she was working on in Tae kwon do...or jumping on my bed giggling...or bopping down the stairs in her scrubs on her way to work... god it makes me ache...

I'm sitting in her darkened room, crying as I blog this. Daniel is curled up beside her napping. Her vitals tell me she is resting well, too. Such a sweet site. It could be a nap any day, except for the tubes and machines. Oh baby girl. I'm so sorry this has happened to you. I'm so sorry this has happened to us all...

I knew it was going to take a lot for her. The doctor and I did discuss that Locked-In patients do gain ground, and do find enjoyment in their lives. Some have gone on to make significant, meaningful contributions to society. It just takes time..a lot of time and help.

I'm knocked out at how many people are sharing in this with us. How many people are helping in any way they can. She is very fortunate to live in a community that cares so much.

I'm not going to let what i saw on that CT change what I expect for her. It is a test and tells doctors a lot. And it told me a lot, too. But, as she's shown us so many times in the last three weeks...tests are just indicators, not absolutes. One test they can't give her is the one only she can...testing herself, her drive, her desire.

This is going to be harder than I thought. But, I'm still on her side and still believe in her as much today as I did yesterday. ...come on, baby girl....i'll be patient....show us what you've got...let us help you get more...

Another friday in paradise...

I waited around after the CT and apparently I don't get to know the results of it until the morning.

I did find out from a nurse that they are planning on inserting a permanent shunt into Sara's brain, as she apparently cannot circulate the fluid to elimination the normal way.

When I arrived in her room this afternoon she was down at CT. I saw a letter up on her board for me - left by the social worker and neurologist. It is the letter I need to start applying for any benefits and disability for Sara. I knew it was coming, and it doesn't say anything they haven't said out loud to me before, but it stung to see it in writing. ...permanentally disabled... ...24 hour care for life... thank god they didn't use the q-word, or I think I may have just passed out. Luckily, about the time my head really started reeling, the nurse and transport showed up with my sweet girl.

She had her eyes open, was following peoples actions and was communicative when addressed. I couldn't wait to look into her face. I kept getting in the way (sorry nurses...that's my baby girl...). Once they had her settled I was able to start talking to her, stroking her hair, taking inventory of her limbs and fingers and toes...

I noticed while touching her that she's starting to lose weight and muscle tone. It is completely understandable and I guess normal for someone who has been confined to a bed for over three weeks. Still, the feeling that my baby is "wasting away" kinda got me a little. But, then I had to remind myself that she is overweight to begin with and will lose weight down to a more normal weight based on her diet. That's a good thing. The muscle tone...well, that can't be helped while she cannot move. We stretch her and flex her joints and such, but tone comes from weight bearing exercise - and she just can't do that yet. I'm going to have to learn what I can physically do to help her.

There is so much to do...so much to think about. The hospital told me that she can't start any therapy until she is better, and cannot go to the intensive therapy hospital until she can withstand 3 hours of therapy per day. I don't get how she's going to go from laying in the bed to magically able to participate in 3 hours of therapy a day...but I guess they'll tell me. I'm just worried that they won't see anything "significant" and not help her/push her. She's had all tubes out of her mouth for a few days and I don't know why noone is starting to help her re-learn how to swallow... She has to learn that again, so that she can keep her own airway cleared. And, besides, I told her that once she could swallow again, i'd bring her nutella and some orange juice - two of her favorite flavors - and maybe a Sobe Courage (her favorite flavor, ironically...)

She got pretty tired, and I helped them turn her and get ready to sleep. Put on a CD for her and turned down the lights. As I was getting ready to leave I watched her for a few minutes. I love to watch my children sleep. If it wasn't for the aspen collar on her neck, and the steady sound of the respirator, it could be her sleeping any other night. Beautiful, peaceful, pink and warm. Those graceful fingers atop her sheet, freckled nose beneath her long eyelashes.

I hope she dreams... dreams of herself like a phoenix rising...

Change in status...

Doctors coming through this morning are getting concerned that she is unable to look up and her eyes seem to deviate based on position. They've ordered more tests, CT etc. and we should have another peek inside her head late this afternoon.

I'll keep you posted.

Just me there today.

No major changes in Sara's status today. The lowered the amount of pressure that her respirator is assisting her from 15 down to 10. She was like that for about 5 hours before the lower rate started to tire her out a bit. They compromised and raised the levels up to 12 which she seemed to do well with. Here left eye started getting slightly off track right before I left. I notified the nurse, who called the doc about it. He said that it was nothing that they hadn't seen before and they aren't worried about it. but they will continue to monitor it and track its progress.

In less clinical news, I spent most of today either reading the Hobbit to her or sleeping. Today also marks three years of Sara and I being together. The nurse, Deborah, Gave us the best possible anniversary gift I could imagine. She shifted Sara to one side of her bed, moved all but one tube and I was allowed to lie down next to her and cuddle for about 2 hours. I stayed like that until my shoulder went numb. I know she enjoyed that as much or more then I did.

More pictures of the girl...

Sara - after the feeding tube being placed in her abdominal wall.

She will be more comfortable without tubes in her mouth and tape on her face.

She breathes through the tube in her neck - but triggers the respirator herself. The respirator only gives a little pressure support and slightly higher oxygen than room air.

Sara and Mom

She still had the oral feeding tube.

Rubbing her tummy because she was uncomfortable. She's been getting tube fed off an on since accident, but not digesting well. They gave her some stuff to help her, but it caused her insides to cramp up a bit.

She's much better after a couple of days.

I'm mentally beat down...

Yesterday I went to one of my client offices to work. I had been into some of my offices since all this happened, but yesterday it started to hit me - the change. I don't know if it was happening all along, or maybe I just noticed.

I noticed the change in peoples faces. They are sad I think, or a little pity. Either way, nobody knows what to say. That really is ok everyone. I know it is hard being a witness to this. It is hard being a player, too. You want to say something that will help, but can't think of anything. Then I have to think of something to help you feel better, but I can't think of anything either...

We really don't have to feel better about this. Not yet, at least. And its ok.

People ask me how Sara is and all I can answer is either "she's not dead" or "pretty much the same". I'm really not trying to be trite. I can't even think of a response that would fit. I know some people ask to be nice, but don't really want to know. Others ask because they really want to know, and to unleash that would not be nice.

That's why I blog this. It is part for self preservation and part for sharing. I think it helps me not having to say things over and over again. And, i'm not so silly to think that I'm the only person who cares about her. I am amazed at the hundreds of people who are following her journey. It gives me strength to know other people care for her too.

But last night - I was so not ready for this - the doctor who put in Sara's PEG tube talked to her grandmother and I outside of Sara's room. He wanted to offer something, say something, and gave us his condolences on this tragedy. ...it echoed in my head.... ...this tragedy.... and then later, in Sara's room, one of his nurses "had" to give me a hug... she whispered to me that this was so horrible and she was sorry... and then I could see all of them - remembered each face that had given me that look - the one that said the same things - and that they were helpless to fix it. And then I felt bad for them. There is still a heart in medicine...

I know this is a horrible thing we are going through, but I still have hope. This is a tragic chain of events that Sara has endured, but she has an internal strength none of them know or have ever seen, as I have. People see her and recognize she is inside that almost lifeless body, but I see beyond that and believe in her.

It just wears me out not to be there, and deal with the other side of this nightmare. I tell you - if I could, I would stay at that hospital 24x7, help nurse her back to health, help rehabilitate her, make sure she was never alone. But I can't.

i'm rambling - and I'm sorry for that. it's just mentally draining right now to think of this, and wish that Sara could just wake up from this and it have been a bad dream... I'm going to go nap...my poor brain needs a rest...

Alive and apparently kicking...

Sara, feisty as ever, is apparently trying to show her displeasure about getting these ski boot looking things put on her feet. I know they must be uncomfortable - and HOT. They are to keep her from getting "drop foot" or a condition that makes her persistently point her toes. If left alone she would not be able to stand eventually.

I just think its funny. I told Mike that it was probably just a reflexive movement, and not a purposeful movement. Nurse-Debora told him that she had done it earlier this morning, too. We still have to wait and see if she can do it "on command".

The doctors still persist that she is totally locked-in and any movements are purely coincidental and reflexive. My bet is on Sara...

Tubes out of the mouth...

Sara is currently getting her PEG tube inserted. This will be her feeding tube and come through her stomach wall. She will be a lot more comfortable. And we'll have all of her face back.

OOH...She did the best thing today... She moved her toes...on command. Way freaking awesome.

She did it for me. She did it for her nurse. She did it for her grandmother. Now she just has to do it for a doctor... She's just stubborn enough to make them work for it.

The doctor just came out. Procedure is all done. It went very well.

As if the girl doesn't have enough to deal with...she has an ulcer. Apparently it is a stress ulcer just below the stomach. Nice... Of course, it is not hard to see why she would be stressed the last three weeks...

Status - Day 19

Sara has been resting today. Vitals stable, no new issues.

They had her up in a cardiac chair (basically a bed that moves into a chair). She likes that and it will help her with circulation and moving the stuff in her lungs. Besides, day in and day out laying the bed can get real old...

She's frustrated today - lots of tears. She wants to be able to move and control her body - but can't. She understands that any recovery possible will take a while, but Sara is not known for her patience. I told her to remember that scene in Kill Bill I when Uma Thurman was saying "move your big toe" until she did...I told her that she has to put her mind back in control of her body - channel that frustrated energy towards rewiring her brain however she could.

We spent a lot of time looking into each others eyes and holding hands. It is amazing how much communication can happen non-verbally, too.

I wish we could wake up from this and it be all gone, never happened...just a bad dream fading away...

Sunday status...

I was indeed exhausted after that yesterday. By the time we got home I just called Daniel and dove into bed.

Daniel went up to the hospital today. He reported to me this morning that she seemed to be doing ok, responding and tracking as she had been.

Later in the day he noticed that one of her eyes was twitching/oscillating and he noted it to her nurse. The nurse called the doctor and they suspect she was having a slight seizure. They have given her antiseizure medication and the movements have stopped. They are not entirely sure they were seizures, but decided to err on the side of caution given her previous 24 hours.

Her brain shunt is putting out steady amounts of cerebral spinal fluid, and it is perfectly clear/yellow as it should be. All of her vital signs are stable and within nice limits.

Daniel and Sara napped together a few times today - him in a chair and her on the bed - I am sure touching somehow. I look forward to him being able to crawl up and spoon her (so cute). I know it is her favorite way to sleep.

I am glad she had a relatively quiet day. I think we all need it, too.

Out of Surgery... Continued

Since I'm sure Kristina is exausted and getting some sleep, I shall provide a breif update on Sara's status.

It was indeed the anesthesia that was keeping her knocked out. She has since woken up and was responsive and aware, although tired. Im sure she is enjoying some sleep right now as well.

Out of Surgery...

She's out of surgery. They sent her to CT afterwards to check and everything looks ok so far.

She's back in her room and now has a few extra machines, bags, sensors...They put the cranial shunt back in and i was glad to see that the fluid coming from the shunt was just as it should be, yellowish clear - not blood tinged. That means that she's likely not bleeding in her brain. they also put in another arterial line so that they can watch her bloodpressure and perfusion pressures very closely.

She appears to still be under the fringe edge of anesthesia, as her pupils are not reacting. Her Grandmother and I will be waiting here until we see her pupils reacting and, hopefully, her waking up wondering what happened...

Sandy and I both nearly passed out from relief when we came into her room to find her pink and warm and still here. It is days like these that age me at an alarming rate.

It is just so very good that the fluid buildup was caught before she coded or slipped into a coma, as happened last time. Her father Tracy noticed her not reacting as I've been blogging - and told me so. I checked and sure enough she wasn't.

Before surgery the Neurosurgeon said that it is so important to watch for these little changes in her neuro status and it was good to catch. I'm resisting the temptation to perch myself on her headboard like an screech owl. I'd probably scare the bejesus out of the girl...kind of like she did to me today...

Emergency Surgery

Sara is currently in surgery. When I arrived today her father told me that she seemed sluggish and that one eye seemed to be "off". After looking at her and trying to get a response from her it was clear to me that something was wrong.

I told the nurse that something was wrong and asked him to call the Neurosurgeon, which he did. The Dr. ordered an emergency CT scan, which showed that she was building up fluid on her brain again, most likely from a small hemmorage. I consented to the surgery to place another drain (shunt) into her head and she is currently in the operating room now.

She was in and out of consciousness before going in, and her Grandma Sandy and I were with her. She cried, being pretty scared I am sure. I put my face right in hers, opened her eyes, and told her that I would be right here when she gets back. It is better to catch this now before it hurts her and it will be ok. It is hard to see her scared and crying, not able to say anything. I told her that I loved her and she answered yes. The OR nurse saw our interchange and went ahead and put some gentle sedation into her IV so she wouldn't be scared anymore.

I'm sitting in the surgery waiting area, with Sandy, about half scared out of my mind. That's my girl in there. My beautiful, sweet baby girl. So very damaged and struggling just to have a chance. If she can feel me right now (and I believe she can, because I can feel her) I hope she knows how very much loved she is. And I'll be right here when she gets out...

Sense of Humor

Anyone who knows our family knows that humor is a staple in our daily diet. We laugh at the weirdest things. Our dinner conversations are frequented with riotous laughter sometimes at the expense of someone at the table (as any of our dinner companions can attest).

I've made jokes in her room, played humorous things off the internet, or told her funny stories since all this began.

I asked her a few days ago if she was able to laugh inside, did she still feel humor? She responded yes, to my great relief. I think it would be worse to be stripped of the ability to laugh about things, see the humor in even the most dire circumstances, than almost anything else I can think of.

But that means that we can bring and let her enjoy humor, without feeling guilty or inappropriate for the circumstances. Laughter, after all, is said to be the best medicine.


My sweet boyfriend Don has been so instrumental in helping me keep my sense of humor. He got the first laugh out of me after a few days of this nightmare, and reminded me how good it feels. My son Michael was so happy to see my humor return. Grandma Sandy, Michael and I howled wildly at a funny story about curly fries and Sara... One day, we'll share it with the rest of you. We want to tell it to her first - she'd love it...

Friday Status and Update

When Daniel and I walked into her room today we were greeted with a very nice surprise... Sara had her eyes about 3/4 open all on her own and was tracking everything. She was responsive, and communicative with her eyes, without prompting. Daniel even said he could tell she was smiling by her eyes.

He can't keep his hands off her. He's been kissing and smooching her, rubbing her arms, holding her hands, rubbing her thigh and knee.

Nurse-Deborah told me that they had her up in a cardiac chair earlier (bed that changes to a chair, but supports her upright.) She got her hair washed (with real shampoo, not that hospital junk) and looks great.

She's very alert today and following conversations and indicating understanding. I told her that the whole Advanced Directive and Sara's wishes thing had been taken care of - Mom had gotten an emergency order (with the most generous and loving help of an awesome woman and tireless attorney Jennifer [yes, people, there are good people who are lawyers, too]) to protect her and put those questions to bed and for people to quit scaring the hell out of her. She gave me a "yes" and closed her eyes for a moment. It seemed like a sigh of relief to me. I asked her if she was happy with that - she responded yes. I told her that nobody will do anything to Sara that she doesn't want, Mom has legally ensured that - and she responded yes again. I am so glad you trust me - yes she responded. (God I love that kid...)

Jennifer - thank you so much for helping set our precious Sara's mind at ease. There is no way to express enough apprieciation to you.

Family, friends, we owe Jennifer a great debt of gratitude on behalf of Sara's wellbeing and control of her own choices, and to my friend Richard, for asking for her help on Sara's behalf.

Pictures from Kaiser 11/8

Hmm...could this be a bad sign??























Sara peeking at Grandpa Don.
Grandpa Don peeking back.



















Grandpa Don, Sara and Mike having a moment.

Who could resist those cheeks??

Very different environment

I have to say, that after seeing this team in action, I am liking the environment.

They take a team approach to her care, and there is a nice positive vibe around her. The nurses joke with each other, call her sweetie, engage her well - poke fun at the environment themselves. They keep it light, while still getting the job done.

What about knocked me out - The Physical Medicine and Rehab specialist came in this evening to do an initial assessment. Told me that they will just be doing the bending and flexing to keep her limber until later on. She emphasized that her medical issues are primary, but they like to get the team onboard knowing what is going on as soon as possible, and then bring them in when it is time.

She's resting well now - wiped out after a day of a nice visit from Grandpa Don and Dad Mike, getting a CT and CTAngio, the initial exams from 3 or 4 doctors from her team, and being just plain cute. I'll wait until she's awake next to check in with her before leaving for the night.

First day at Kaiser

Sara is pretty stable this morning. Not doing much except getting poked on and examined by the new doctors. Apparently these two hospitals do a lot of stuff in tandem and communicate between the two.

They are repeating the scans, labs, etc. as part of their intake evaluations and getting her care setup. They will do a repeat of the CT and CT Angio to check bloodflow, etc. and the condition of her spinal fracture.

I did talk to the Neurologist on the Neurosurgical team. He did a brief exam of Sara and has read her chart from Davis. In the course of our discussion I found out more that was going on with her than I had even been told at Davis. It actually pissed me off, and I said so, that there was anything I didn't know about what was going on with her. He explained it to me, and how I could see those signs, but I'm not the trained eye. I'm just a real quick study.

He did say that for someone who has been through everything that she has, and survived, is sign that she is definately a fighter. He went down the line of her injuries...and it kind of hit me just how much she's endured. (I try to look at each thing individually or I would get so overwhelmed...)

The car accident, head trauma, neck trauma, hanging upside down, unconsciousness, C1 fracture, tear in her vertebral artery, blood clot forming where her artery tore, blood clot dislodging and moving into her basal brain and causing a pontine stroke and coma, helicopter transport to better care, extraction of the clot and the administration of anticlotting drugs, conscious and aware and nobody knowing, MRI results, locked-in syndrome, buildup of pressure in her brain, buildup of fluid in her brain, code blue and resuscitation, coma, emergency CT scan, having a shunt put in to drain, subarrachnoid hemmorage and bleeding into the brain, pneumonia, traecheostomy, ambulance transport to Kaiser.

Fifteen days. All of that in fifteen days.

The Neurologist was very straightforward, which I appreciate. He doesn't see movement in her extremities yet and isn't making any conclusions this early on.

After meeting with the Neurologist and the Neurosurgeon in charge over here I get a good sense that they will be very thorough and coordinated in her care. They came in and introduced themselves to Sara and tried a couple of questions, but she's pretty tired from being rolled about an hour ago. I know she's not showing them much to go on from here, but that's ok.

At least this room is a lot more peaceful than the one at UCD. Even being at the end of the hallway there was so much activity passing by her room. The nurses did a great job of keeping it calm in there, though.

I'll keep you posted.

Settling into Kaiser

Sara made it over ok. Moving wiped her out and she's barely responsive right now.

This is a huge ICU. The entire third floor of the hospital is divided up into two ICU units, east and west. I'm wondering what the nurse to patient ratio is...

She is not in a Neurosurgical ICU, but a Neurosurgical bed in the ICU. I'm a little worried now, but probably overreacting. I know this is a different hospital, different health system. What she basically needs now is rest and an opportunity to heal...so the quieter environment should do her well. I get to help a whole new crop of nurses and doctors learn how to communicate with her...

The very first thing one of the doctors brought up was a question about some notations in her record from UCD about, yes, you guessed it, advanced directive. Will they just leave it the hell alone...

Anyway, she made it here. We'll see tomorrow what this group of doctors has to say and do for her...

I'll keep you posted.

Transferring at 6:30 pm

Sara will be transferring at 6:30 tonight to Kaiser South ICU. She will be taken via critical care transport at that time and I'll follow her over and help get her settled.

So lost right now...

right now I feel so helpless, lost... She's awake, responding slowly. I don't know what to ask. She's not in pain right now, but tears up. Her heartrate is up and she's getting sluggish. And I don't know what to ask.

I've been sitting here all day, looking for someone out there that can offer some treatment, hope, or something for this condition. I know she has to get to rehab and start. but someone out there has to be an expert in this type of stroke, this syndrome...

I'm so angry and hurt that my sweet girl was allowed to have a stroke. It isn't fair. I know life isn't supposed to be, but damn. And now she's alone inside and can't move...i'm thrashing around in the dark trying to find her...

i wish they could take that part of my brain and fix her. take something. do something.

I just realized that moving from an academic/research hospital to a commercial hospital - they won't be looking at who out there can do what for her. we have to.

Plan of the Day

Sara is stable, resting and listening to a Lord of the Rings soundtrack.

She's a little scared about what's going on around her. All the conversations, and knowing she's moving. She's not in any pain right now, but the nurse offered her something to relax her, which she accepted. She's been tearing up a bit and I know she must be scared. I've been talking to her, explaining it, but it is still an unknown for her - those normally scare her anyway.

The transfer team is making their arrangements, checking charts, etc. and that will happen later today. She is stable enough to transport and for Kaiser to accept. She will go back into a neurosurgical ICU and continue care from this point.

As I find out more, I will keep you posted.

Oh, and yesterday the hospital had part of their legal team (ethics) take a look at their rules, her chart, everyhting and make a determination if they felt that her wishes were being adequately served and communicated. I found out about this review quite by accident. I sent the social worker an email asking basically what the heck was up... She called me this morning and told me that they were doing so as an internal audit to make sure they were comfortable with the whole situation. They have now determined that they are. I did come into her room this morning and find a copy of their internal policy regarding advance directives, patient care, and their physician options. had some particular references highlighted that bugged me, but its going to be a moot point this afternoon when she moves - at least at UC Davis. They have given her AWESOME care - no doubts there. But, boy have they got to work on their bedside manner with regards to communicated wishes and listening to the patient's representative (namely ME).

Her nursing staff - fabulous. Especially Carlo, her primary nurse. He really kept the rest of the nursing staff very well coordinated with regards to her care and communications. That made a huge difference I am sure.

I'll keep you posted.

K

A quiet day...

Sara's shunt was removed last night and she's been resting today. Her Dad, Mike, has been up at the hospital today hanging out.

Her heartrate has been fluctuating today and they've had to watch her closely.

She's been a bit more awake today and got a chance to watch TV with Mike. He said she got tired of holding her own eyes open, but wanted to keep watching TV, so Mike held open her eyelids and blinked for her. Just like the princess...

On other fronts - I am getting ready to dispose of her car "Maria". I know she loved that car, but it is totalled and i won't get it fixed. She almost died in it.

Got some picture boards so we can scan some of her favorites for her hospital room. Also went by her work and talked to her boss, Dr. Kundra. He really misses her and like everyone is hoping for her continued recovery and best health.

I'll let Dad fill in the specifics of todays visit. Just suffice to say, she's resting, slowly getting better and we continue to look out for her.

They are starting it up again...

The bullshit about an Advanced Directive..wanting me to change her to a "no code"/do not recusscitate. I am so freaking tired of them hammering me with this. The last time this happened the doctor ended up yelling at me in front of Sara and she ended up coding and all the issues we've had to deal with for the last 6 days.

They are talking about 'quality of life' and 'prognosis', etc. They aren't even seeing that they are asking me to basically kill my thinking, breathing, communicating daughter. I have asked her, and she has said that she wants to keep fighting. She wants a chance. I've told her the different prognosis' and told her how hard any recovery is going to be, its going to be a long road. She knows.

This kind of pressure from headstrong doctors wears me down more than the prospect of her not progressing past this point. They just don't know her. They just don't know what she wants. And in the absence of written instructions about THIS SPECIFIC CIRCUMSTANCE (Locked In Syndrome) they are just going to have to trust that I am doing what Sara wants and leave that question, and me, alone.

Moving to Kaiser Neurosurgical ICU

I just got told that Sara is being transferred tomorrow afternoon to Kaiser Neurosurgical ICU nearby. The UCDavis Neurosurgeons are comfortable that she is safe to transport and Kaiser has appropriate facilities and capabilities to address her needs. I have verified that if any of her recent challenges were to pop up again that Kaiser does have the ability to treat her at the same high level of care as UCD.

I was just told that she will have her cranial shunt removed today, and that Kaiser will put in the g-tube in their facility.

Her condition has been listed as Serious, but Stable.

Pretty girl peeking...

Resting quietly...

Sara had a big day yesterday and is wiped out today. She hadn't been fed in two days, so I am sure her energy is down because of that as well. They've clamped off her shunt, so her intra-cranial pressure has been fluctuating a lot. When she coughs it goes pretty high, but normalizes shortly after. This also has her wiped out a little bit, and her responses are sluggish. The neurosurgery team is watching this closely.

They did place an orogastric tube this morning (mouth to stomach) so that we could get some nutrition into her. That tube will stay in until tomorrow when they insert a gastric tube through her abdomen into her stomach. This will allow her to be fed via a port on her stomach, until she is able to suck/swallow and take food normally. When both the g-tube and traech are no longer needed, they get removed and the holes basically close up on their own. But, for the near future she'll need these in place so she can complete healing from her acute injuries and move onto rehabilitation.

It is such a treat to be able to see her whole face. Its hard to believe just how hurt she is with as good as she looks this morning.

She'll be resting the remainder of the day, and we'll keep her as quiet and comfortable as possible. Tomorrow she will go to the OR and under general anesthesia for the g-tube placement.

Traecheostomy done.

Well, much later than scheduled and not without problems during the procedure, Sara's traecheostomy is now done.

She's enjoying a nice big legal cocktail and laying back and being serenaded by gentle music. Daniel is holding her hand and sitting within her field of view. (when she opens her eyes)

Her face is so beautiful. Always has been. It was so sweet to see Daniel kiss her on the lips. (remember - those lips are reserved for him. she doesn't like to kiss other people on the lips) Her face looks so relaxed.

Seeing the tube in her neck does make me a little sad, though. I know it is a step towards her getting to recovery - but it looks so permanent. It isn't though...they told me that once she has progressed enough they start "shrinking" the tube and eventually it is gone. That is, if the patient is no longer respirator dependent. It all just takes time.

Still, being able to wash her whole face, look at those pink full lips, stroke her whole cheek...like a little bit of heaven, wrapped in a veil of hope.

Daniel and I are going to stay until she's out of the rest of the anesthesia and breathing on her own. She's already starting to overbreathe the respirator, so they'll switch her back to letting her trigger the respirator herself once she's steadily doing so.

She'll probably be resting tomorrow. That would be my preference.

Plan for today

Sara had a nice stable night. They've decided to go ahead with the Traecheostomy today at 11am. Until then she's resting a little.

The Neurosurgery Attending came in this morning and they are clamping off her shunt, to try and get her head to drain the CSfluid the normal way. The nursing staff is watching her intra-cranial pressure and will check her responses if it goes up too high. Once she can maintain her intra-cranial pressure and drain the fluids normally they will remove the shunt.

Nursing staff noted this morning that Sara does seem to respond best to me. She and I communicate every day, so I'm not surprised. Other people have to get up to speed for her. The nursing staff is doing their best - but this is so foreign to them.

Her father Tracy is scheduled up here today. And her boyfriend Daniel is coming up. She was happy both of them are coming up today, when I asked her lastnight.

One note - I am trying to respect Sara's body limits, even while she is in her current state. She will have her endotrachael tube removed today and a tube put through her neck. Even though her lips will now be accessible, she does not like to be kissed on the lips by anyone but her boyfriend. So, if you visit her, please kiss her on the nose or forehead. Better yet, kiss her hands. It will cut down on the likelyhood of accidently giving her a cold or the flu. (especially since she already has pneumonia.)

I'll keep you posted.

Did you see that?...

I just got done running around the hospital getting my excited worked out...I know...I'm a big goofy woman...

Sara has been moving her head side to side, shrugging her shoulders, swallowing. And, about an hour ago, she moved her right leg in response to getting suctioned. She didn't extend it (which indicates a purely spinal reaction) , she pulled her leg up. I nearly fell over.

I looked at the respiratory therapist and asked him "did you see that?"

He said "yes, she moved her leg."

Yeah. she moved her leg. but more importantly is HOW she moved her leg. She pulled it up, instead of extending it. They've told us that she wouldn't be able to do that. Or any of the other stuff she has done the last two days.

It is still VERY early after her stroke, but you almost have to peel me off the roof. It could still be another couple of weeks before she's all done with the swelling and fluid in her head affecting her. Then we'll know her recovery starting point.

But right here, this moment, I feel like I just watched her jump out of the starting blocks for an olympic race. Go SARA!!

Procedure on hold

The pulmonology team came in to do her Traecheostomy this morning. During the preparation the Neurosurgery Resident came in and asked the nurse if anyone had told them she was on asprin and getting a shot of heparin each morning. Well, noone had told them, or put it on hold, so they had to place the procedure on hold. They would not want her to bleed excessively (neither would we!)

The Respiratory Therapist got in her tube and gave her a real good clean out deep in her lungs, in preparation for the procedure, and cleaned up her throat and nasal passages real well. She's breathing pretty easy right now, and is nearly flat in the bed for the first time. (she's been at 40 degrees since she got here...)

I'll keep you posted on the plan. Otherwise, she's got some knock out juice in the IV and is resting really well.

Don't forget the normals...

One of Sara and my favorite things to do on Thursday nights is grab some type of "crap in the bag" and sit down in the living room, tucked on the couch and big chair with our assorted maminals, and watch TV. We record Private Practice, Greys Anatomy, ER, Ugly Betty and watch them all on Thursday night. (ironically we love the medical dramas)...

Well, since she's been opening her eyes and peeking I thought it might be nice to fire up my laptop and watch one of the shows from lastnight. It was so nice just to sit beside her, holding her hand, and watching some silly show we enjoy. She'd peek open her eyes throughout the show, but she mainly listened.

She seems to have enjoyed it. I'd ask her, but I looked over and she's in a nice deep sleep, with the sweetest face... and all I can do is watch her sleep...

Gathering strength...

Chaplain Beth came in a little while ago. Asked if she could pray with Sara. Well, since Sara has been awake and communicating today, I asked her. Knock me over with a feather, she said yes.

That right there is a huge change for her. It seems to me like somewhere in this week of hell she has either come to some understanding about God, or decided that she's going to get help from wherever she can to get through this.

One thing I've learned this week about her...never underestimate Sara. There are so many instances, during and after the accident, that she shouldn't have survived...but has. And, even in the midst of such a massive brain injury, she's still in there - telling us what to do. So her...

Tracheostomy scheduled

Sara is scheduled to have a Tracheostomy inserted into her neck tomorrow. This will take the place of the mouth tubes currently in place. This will make her a lot more comfortable and get tape off her face.

The surgery will be done in her room, and she will not be under general anesthesia. They will kind of knock her out from the IV and go from there.

Since she is scheduled for a surgical procedure tomorrow, I'm going to ask that we have no visitors. In the morning she will be resting and in the afternoon recovering. We'll see if she can have visitors on Sunday - limited to 2 or 3 people having short visits. She gets tired so easy.

She does, however, love to have music. I have been recharging my ipod every day for her. I played one of my lists from itunes off my laptop. She has a CD player in her room, so make her some CDs. Be sure and record some voice messages and notes for her, too. I'm sure she misses all her friends terribly. You can drop them by our house, or give them to Michael.

She's a little sad today. We cried a lot. She's starting to realize just how hurt she is and is tired of being in the hospital. I talked to her about her accident and injuries...she remembered them.
I've told her that we've got a hard road ahead of us, and not sure how far it goes. I think she's wanting to start thinking about the next steps... So, Mom gets to start figuring out her roadmap.

peek a boo

Guess who is starting to peek out?

Friday Status

Well, Sara is doing pretty well. Had a quiet night. Just cruising along.

This morning she has been more alert, keeping her eyes slightly open and peeking at everyone. She has been able to communicate with the nursing staff and has been made comfortable.

We looked at her chest x-ray for this morning, and it looks much better than yesterday. Still has junk in the left side, but clearing.

The Attending and Resident physician came in a little while ago to discuss her shunt. they are pushing to clamp it off and see how she does. The resident, in particular, is another one of those "this is all you get" kind of guy. He had told me before he placed the shunt that it didn't make any difference, she wouldn't come out of the coma. Well, she did.

Neurology service has signed off on her. Basically, she has the diagnosis of Locked In Syndrome. Once her acute medical issues are healed, we'll be able to start talking about moving her to a rehabilitation facility.

You know, the day to day negative is starting to really wear on me. It is almost like these guys never read the internet or see other patient outcomes. A persons life, viability, comes down to black and white on an MRI. I don't know what the future is going to hold for us. Quite frankly, it scares the bejesus out of me. But, she's here. She is not indicating "suffereing". When the time is right she'll tell me what to do.

I'm looking forward to another shot in the arm, though. Someone to look at her and say "yep, we can help her...) My daughter saved my life once (by being inside of me and kicking when I was so devistated over losing Christopher) and I owe her a life in return.

Fur Therapy

Dusty on Sara's lap.

He settled right in. StepDad helping her stroke kitty.

The Community Voice

From: The Community Voice News Department [mailto:News@TheCommunityVoice.com]
Sent: Thursday, November 01, 2007 12:18 PM
To: news@thecommunityvoice.com
Subject: Online-only story from The Community Voice
Hello,
We've never done this before, but this is a special case. Due to deadlines of a weekly paper, we were unable to get this story into the Friday, Nov. 2 print edition of The Community Voice. But, since we have a Web site which we can update any time we wish, we have chosen to publish this in an online-only format.
This is a special story. It's about an RP girl, Sara Baker, who was in a near-fatal car crash last week and is continuing to recover. A story may appear in the Nov. 9 print edition of The Voice, but it will likely be different than this one.
The story can be viewed at http://www.thecommunityvoice.com. It's the main story up right now. It will remain on the Web site throughout the week, but may not be on the front page. If you need to find it later, check the "news"
section on the menu at the left of the page.
We wanted to make sure the community is aware of this online-only story.
Please feel free to spread the link or forward this email to any and all you think may be interested.
Thank you.
--
Nicolas Grizzle
News Team Leader
The Community Voice
Ph: (707) 584-2222 Fax: (707) 584-2233
www.TheCommunityVoice.com

Eventful afternoon

In case it hits the newspapers...there was a fire today in her ward. Somebody put a potato in the microwave with a papertowel around it...well, tater caught fire. The smell is SO nasty. They've closed off the ICU rooms from the main ward and everyone is fine.

Sara has, for the past hour or so, been having a little up and down trouble with breathing. She's been moving some junk into her breathing tube and needing to be suctioned. She had a hard time for a few minutes and got a little scared - which is totally understandable.

They've bumped up the amount of oxygen they are giving her, but she's still having a little trouble maintaining her blood oxygen saturation level (SpO2). Her nurse has called the respiratory therapists as we're getting concerned about her status. Nurse-Carlo has bumped up her oxygen percentage up to 100%.

The RT says it looks like her left lung is either partially collapsed, or half full of junk she needs to move. They are calling the docs to get instructions to make her more comfortable and get her breathing easier.

I talked to her and she is scared right now, but not in a lot of pain. She knows we are here and watching her very closely.

Morning Status - Cruise Control

Sara had a nice restful night. When I left she was sleeping very closely to how she normally does. (I periodically go into my kids rooms at night and watch them sleep...I always have). So, when I left I was quite comfortable that she was getting exactly what she needed most.

This morning I came in and she continues to do well. I was called early this morning to authorize a PICC line (also called a central line) that will give them real good access into a vein (superior venacava - just above the heart). This is more of a long term access (weeks...) and lets them discontinue the myriad of smaller IV lines currently into both arms. This will make her much more comfortable and allow us to start some therapy with her hands, wrists, and forearms.

She continues to do well breathing, but is showing signs of another pneumonia. They have cultured her lung output and will start her on antibiotics as soon as the culture grows something they can specifically identify. They no longer just blast a patient with broadbased antibiotics, as that builds resistence for future infections. Her respiratory therapists are very on top of her breathing ability.

Nurse-Carlo just told me that she did grow Staphloccocus aureus out of her culture and they are starting the IV antibiotics on her now. So, she does have a touch of staph-based aspiration pneumonia. We've heard a lot about Staphloccocus aureus in the news, specific MRSA, which is Methcillin Resistant Staphloccos Aureus. She does NOT have MRSA. The staph she has is normally resident in the nasal passages, etc. and doesn't really affect us, until aspirated into the warmer, moister environment of the lungs.

They are also giving her some Lasix to pull excess fluids off of her tissues. She's getting a little puffy, and her right hand is downright marshmallow. so, she'll be shedding the excess fluids and it will make her more comfortable and heart not have to work so hard moving the excess.

Her cranial shunt is continuing with fairly steady output. The neurosurgeons have started raising the resevoir above her head. This will start encouraging her natural drainage pathways in the brain to start moving the fluid the normal way. They move it a little, watch her intracranial pressure (ICP) and if it doesn't go up, then she's circulating and draining normally. They suspected that the normal drainage pathways became swolen with the rest of her brain injuries. We expected the swelling, but not the buildup of the fluid.

So, right now she's resting after them putting in the PICC line. She's basically on cruise control...rest, wake, communicate a little, rest...

Today, her beloved cat Dusty gets to come for a very short visit. The cat has been in mourning, having no concept of time...he just knows she's been gone a week. When I talked to her about her kitty a few days ago she cried a lot. I know she misses him terribly. The visit will be a big source of comfort for both of them.

I'll keep you posted.

Oh, and thank you to everyone who has been donating, calling, helping in any way. Your support is felt all the way from your heart to Sara's room. There is no way I can express enough gratitude for each of you.

Loving thoughts...

Kristina