Month: June 2010

There’s no rest for the weary. That’s how today felt. But we have no complaints because we enjoyed all of it.

We met with the doctor this morning and he insisted that we get Claire out of her bed. They laid out that we needed to hold her and give her a wagon ride around the unit. It sounded like a good idea to us. It was.

The first order of business was to get Claire prepared for the day. This included a diaper change and a new hospital gown (she graduated to hospital gowns yesterday and feels much more proper partially clothed now). Her eyes were alert and searching while we prepped her. An unexpected show of progress had our hearts in our throats while we were talking to her. For context, while Claire has been awake, her eyes have tended to shift to her upper left: it seems she is more comfortable looking that direction. This could be due to the insult to the brain or just her natural tendency. Either way it has been difficult for her to shift her gaze to her right since waking up. Tiffany was talking to Claire on her left today when I came to the right side of the bed. I told her to “Look at Daddy” and then looked away briefly. The words weren’t out of my mouth when Tiffany said “She’s looking at you.” I looked back and her eyes had shifted to her right to meet mine. It is another small step, but it was a big one for her. Throughout the day Tiffany and I both kept testing and she was responsive with her looks and is starting to track with more efficacy.

We started the days activities with some Mommy-Claire bonding time. By the end of the day, Tiffany logged several hours worth of holding Claire. It was good for both girls.

Wagon rides around the PICU were next on the agenda. We also arranged to have Heidi and Autumn play roles. They hadn’t seen Claire for a few days and were able to spend about 30 minutes with her today while Claire cruised. They couldn’t follow her through the unit so we staged a train station where Claire would pull in for five minutes with Autumn and Heidi before taking another lap.

It was fun to watch the girls with Claire. They both said such sweet things to her and consoled her about some of the things that have been concerning them. Autumn was unsure of how to handle the news that Claire may need to use a wheelchair for a while. She took the opportunity to tell Claire that she didn’t need to worry about being in a wheelchair because she and Heidi would push her, help her and find things to do that she could do with them. The sweet things they whispered to her made us cry; and it was nice to be together as a family again.

Claire listened intently to Autumn and Heidi, watched their faces and tried to talk to them. Each time that we went to make another lap, the girls would watch us from around the corner and wait for Claire to return.

We all got a chance to get out of the hospital and go to a nearby park with our friends Jon, Becky and Evan. We are still tormented when we leave. It was great to get out, but each time we leave behind a member of our family. It doesn’t feel right, and we battle thoughts that continue to plague us. We miss Claire, and we miss being a family. We won’t be comfortable again until she rejoins us.

To hasten that return, we have learned that our tentative transfer to Baylor Children’s House is set for Tuesday. We are all eager to get started on Claire’s rehab, but we are sad to see so many people who have been so critical to this story left behind. We take consolation in the hope that we will soon be back to introduce Claire to the people who saved her life.

Thank you again for your prayers and support. We continue to be overwhelmed.

It’s a slow news day here at the hospital. Claire slept well and continues to rest. We watched a lot of football today, starting early this morning with the Korea vs. Greece game. I’d like to think that it’s helping her, but people keep telling me it’s just wishful thinking.

Tiffany did some stretches with Claire this morning. Her legs and arms aren’t nearly as rigid as they were before the splints. The splints are helping move her feet back to normal and alleviate the pain. The stretching will also help her from losing range of motion which can set in if physical therapy is not performed. The therapy also helps us feel slightly empowered in her recovery: it’s something we can do to hasten her efforts.

We received a package today from American Martyr’s School in California filled with cards from students. This followed another package we’d received filled with cards from an elementary school in Keller, TX. We laughed and cried as we read them to Claire. One card summed up the sentimentality from all the students. On the front it said, “Let’s work to get this girl going!” And to make sure the message was clear, the back read, “Seriously Claire, get well!!!!” To all the students who are following Claire’s story, please know that we read your cards to her and thank you for the time, effort and care you have put into them.

As always, thank you for your prayers and support.

I hope to have some more details to post this evening. Just in case I don’t, I’ll let this following picture close out this one.

We’re settling into the cadence we expect will continue until we get our transfer orders to Baylor Children House. It’s a slow, plodding pace and we’re thankful for the opportunity to catch our breath.

Claire slept through the night last night with relative ease. It was good because the morning started with occupational therapists darkening Claire’s doorway. The therapist spent some time demonstrating how to stretch Claire’s ankles, calves, and shoulders. The therapist also test some of Claire’s response control. Claire was told to move her arms up and down. She couldn’t, but she was trying. The therapist said that while she was holding Claire’s arm and giving instructions, she could feel the muscles attempting to lift her arms. She needs help to lift them, but she is responding to some degree. Small, minute steps. Steps nonetheless.

Claire also got to sit in her captains chair today. Her one hour of scheduled time turned into two and a half after she fell sound asleep. The upright position helped clear her airways and escape the prone position in the bed. The physical therapist worked with Claire’s legs and arms again. Claire is making effort to raise and lower her legs, but it is hard to distinguish between some slight agitation posturing and real effort. What we do know is that her legs are responding to touch.

Claire also got her much loved, much adored blanket today. We tried to incorporate it into physical therapy asking her to reach or grasp for it. This was met with protests or frustration. It’s hard to see the pain in her eyes but we’re happy to see the struggle from what we’re telling her to do and the effort she is making to perform. After an hour of work and healthy coughs, she fell asleep.

No big leaps have been made. No major changes. But we are encouraged by the slight day-to-day changes. I am eager to share updates, but I must be patient with those little movements forward. I thank you for being patient along with me.

Later today Tiffany and I got to hold Claire. It warmed both our hearts to feel her in our arms.She was agitated because of some chest congestion but slowly drifting in and out of sleep with us.

Thank you for your prayers and support.

I got to hold Claire last night. It was the prelude to today’s emotional day. It wasn’t for long, but it was long enough. The nurse needed to get Claire’s weight and asked me if I would be able to hold her instead of getting another nurse for help. I was surprised she asked. Her eyes were open and she cried a little from the activity. I cried a lot after she fell back to sleep.

Today ended up being an emotionally draining day. I’ve come to expect the ups and downs. When I woke up this morning – meaning I actually fell asleep last night – I could sense that today would be an emotional drain. It hasn’t disappointed. Claire’s eyes are open much more today than they have been since being here. She’s having a hard time dealing with the discomfort and pain, and since she can’t talk we are only guessing at what is the cause.

We are drinking in what connection we can get with her through her eyes. Tiffany was feeling a little downtrodden because Claire hadn’t held her gaze yet today. I was able to catch the moment she did.

While she looks alert in this picture, she is still battling the malaise from the medications, initial insult to the brain and recovery. But it’s enough to see her beautiful blue eyes.

Claire finally got her leg and arm splints today. She is on a three hours on/three hours off cycle for the splints. The first round really helped reposition her legs so they are pointing up again. A few more days of occupational therapy and splints and her legs should not be as stiff and sore.

Claire continues to take small steps. The ambiguity and uncertainty continues, but she is making progress. We continue to hope that while the road may be long, the progress will be astounding.

Thank you again for the support and prayers. We will continue to update and I intend to start posting more pictures so you can see the progress, not just read about it.

I’ve lost all track of time and it has no meaning for me right now. Tiffany and I were trying to remember what day it is and are baffled that it’s already Wednesday. My apologies that our space/time vertigo keeps you waiting for long-overdue updates.

The most important piece of information is that Claire is still breathing on her own since being extubated today at 10:00 AM CDT. Her vitals have been strong today. She has a strong cough and is swallowing well. Everything was looking so good that the respiratory therapists moved the ventilator out of her room only two hours after extubation.

Claire did a great job of self-modulating her heart rate and blood pressure for most of today. As the evening clouds moved into the metroplex, so did Claire’s agitation. Her heart rate started spiking around 4:30 PM CDT and posturing followed suit. Today’s doctor was concerned that she may be experiencing small, undetected seizures. After an hour and half set up and EEG test, we determined that Claire is not having seizures. The test did, however, indicate subnormal brain activity consistent with a global brain injury. This is not new information. We added a sister medication to the adavan to help settle Claire’s agitation and it has been working very well.

Claire was awake for nearly two hours after being extubated. Both Tiffany and I felt she was locking eyes with us. My resolve crumbled and emotions tumbled forth when while holding her gaze she seemed to try to voice some words. She is so hoarse from the ventilator all she could do was squeak. Throughout the day she’d continue to try to make noise as she attempted to cry. It was very sad and brought tears to our eyes every time.

After 10 days of waiting, Autumn and Heidi finally got to see their baby sister in the PICU. It was a short, seven minute visit, but it made them very happy. It made us happy to see them with Claire. I learned later that Heidi internalized seeing her sister much more than she let on when she cried in my arms, “I just want it to be like it was in the past.” She was happy to see her sister, but she is scared of what will come. So am I. We still don’t know how capable Claire will be. We will learn that in the coming weeks, months and years; however, the uncertainty is wearing on our entire family. Autumn and Heidi have both confessed that they want Claire to be the same. I can’t tell them that she will. My heart breaks for them and for me and Tiffany.

We continue to try to avoid getting too much in our heads about what the future holds. We are trying to take each day, one at a time. But the lack of sleep, exhaustion and roller coaster emotions are taking their toll. Please pray we all sleep well tonight and that Claire continues to progress. I have some updates about Baylor Children’s House that I will include in tomorrow’s posts.

Thank you again for all your love and support.

Tiffany and I just stepped out of Claire’s room as the team assembles to extubate Claire from the ventillator. Please pray that she continues to get stronger and is able to swallow and cough well enough to clear her airways.

She is breathing well right now and her eyes are open. Thank you for your prayers.

I’m in Claire’s room again this time listening to the smooth tones of Jack Johnson: Claire likes his music and it seems to calm her.

Today was part two to yesterday’s hard day. Claire was very agitated yesterday and her heartrate and blood pressure betrayed her feelings to the world. It was difficult to watch and concerned the doctors. Today, Claire didn’t have a chance to be agitated until after surgery and the anesthesia wore off. We were disappointed to see the posturing continue as she started to stir.

What was encouraging is that the posturing doesn’t appear to be as aggressive as yesterday. Furthermore, her heartrate and blood pressure were not as volatile. Claire also did a much better job of moderating and calming herself today.

We were disappointed that the ventillator tube didn’t come out today and were hoping that Papa would be able to kiss her goodbye tube-free before be had to return home tomorrow. As it is Papa gently held her hand and whispered he’d see her soon without the tube.

It is hard too see my dad go home. He is a comfort to be around. He is strong and caring. He loves his family. The home he made for me and my siblings while we grew up made me want to duplicate it. While our world fell apart this week, he took care of us. I love him for it.

While my dad missed the extubation, he didn’t miss it by much. We’re expecting to have the ventilator tube removed early tomorrow. This is a big and complicated step. Claire is breathing well over the ventillator but we are still concerned about how well she will be able handle mucus production in her airways. We unconsciously swallow and dispose of mucus that lines our airways. We don’t know if Claire will be able to do that. She has a low cough and gag reflex that indicates she should be able to do it, but we don’t know how prepared her body is to take over those functions. So tomorrow will be a long, challenging day as she is monitored and makes a case for staying off the vent. Please pray her body only gets stronger once she’s extubated.

All of these events will take place in the context of Tiffany’s birthday. While celebrating is a difficult proposition, I am mindful that tomorrow is the anniversay for when my beautiful wife and best friend arrived. She will always hold my heart and I will always pursue hers. We celebrate together and we grieve together. Tomorrow will be a combination of both, and we will do that together as well. I thank God for my Tiffany.

Hi, this is Tyler’s sister, Emily. Since Tyler and Tiffany are focussed on Claire’s post-op recovery right now, I thought I’d try to answer some of your questions.

The doctors’ intention to move Claire to the Our Children’s House at Baylor is one more step toward her recovery. Our Children’s House specializes in preparing not just the child, but also the child’s parents for the day-to-day routine of life and rehabilitation at home, as well as connecting them to a network of experts who are available for advice and support. While Claire’s doctors will not move her there until specific goals have been met in her recovery, it is an excellent facility. If you want  more information, their website is at http://www.baylorhealth.com/About/FactsStats/FactSheets/Pages/OCH.aspx.

As far as the G-Button goes, it is only one more tool to help in Claire’s recovery. It can be used as little or as much as necessary, depending on Claire’s ability and willingness to eat orally, and it can also be used to administer medications. If at some point Claire’s G-Button is no longer needed, it can be removed, and the place where it was will heal over much as a person’s skin heals after a piercing is no longer in use. Ultimately, however, its duration is entirely dependent, like so many other things, on Claire herself and the rate at which she recovers. Wikipedia.org offers a decent explanation of the functions of a G-Button and has some useful external links. If you are curious the website is http://en.wikipedia.org/wiki/Feeding_tube.

Tyler, Tiffany and our entire extended family thank you so much for your love and concern toward Claire and toward us. While I can more than understand your desire for more detailed information, some of these topics are still difficult for them, as parents, to discuss precisely because so much of the process is still wrapped up in “wait and see.” I can also assure everyone, having met them myself, that the entire medical staff at the hospital are ridiculously awesome, and that her doctors are not only extremely competent but they are all personally invested in Claire’s recovery. They are making and will continue to make the decisions that are best for our girl. Thank you all for your truly amazing support, and also for your continued patience in letting Tyler update us only as much as he is able to do so, and at his own pace.

Claire is out of surgery and recovering from anesthesia. Evrything went very well and without complication. It’s hard to see a foreign object in our baby’s body and will take some time to adjust.

Thank you for your prayers and support. We will update later today as we determine whether we will get off the vent today or tomorrow.

The surgical team will be here any minute to prep Claire for her surgery. We’re feeling some butterflies and appreciate you keeping us in mind for the next couple of hours. Claire got a good night’s sleep and is very relaxed.

Today is a big day and we’ll keep you updated throughout the day. After surgery we are planning to come off the ventillator as well.

Stay tuned.