Month: June 2010

I’m going to keep this update short since I hope everyone is spending their time together as a family for today’s holiday.

Claire has had a challenging day. The doctors have weaned her completely off the methadone and have steadily decreased her ativan (yes, I was misspelling it earlier). Her agitation has remained constant as more of her body wakes up. She is having trouble sleeping through the days: her brain is trying to reorganize itself and battling between staying awake and succumbing to sleep. She will calm down for three or four minutes before getting agitated for 30 seconds, then start the cycle again. It’s hard to hear her struggle.

The noises she makes to express agitation have continued to evolve. She is employing a whimper now that is much closer to the way Claire used to cry. It break our hearts and cheers us at the same time – it’s an odd dilemma. She sounds so pitiful, yet we can hear some aspects of the Claire we miss. Then there are the yells. Those are fun. She uses them freely when we’ve done a rehab stretch and held it for a long time. It’s either her way of telling us to cut it out, or a victory cry. We’re choosing to believe it’s the latter.

I am very thankful for my father and father-in-law today. They are both men of strength and virtue. Their response to this family crisis is but a glimpse of their character. Everything they have demonstrated these last three weeks is accurate. We love them for that and much more.

Thank you for your prayers and support. Happy Father’s Day.

I don’t have many Claire updates today because I didn’t see her today. We wanted to make sure the girls got a break from the hospital today. Autumn’s basketball game fell in the middle of the day, so the morning was spent readying for that.

I spent the remainder of the day with Autumn and Heidi while Tiffany, her mom and her sister went to see Claire. The girls came up with the idea of brushing and styling my hair. It was pretty relaxing. But I had to tell Heidi I’d prefer if she didn’t apply makeup and put me in a fancy dress. Autumn tried to sneak away for Tiffany’s makeup case: she’s sneaky in her own mind and I caught her before she’s even made it to the bathroom. It was time well spent.

I had a reason for staying home the rest of the day. My outlet has long been soccer on the weekends. It’s a way to relieve normal day to day stress and it helps me sleep better at night. Betwen the lack of exercise, sleep and appetite I’ve managed to lose 15 pounds since this started. I attribute a large part to the stress and many of my close friends – and wife – have been encouraging me to get back on the field. So I did tonight.

My teammates were very attentive and didn’t pry at all whih meant the world to me. I went in with the intention of scoring one goal for Claire. I scored three for her. This was due in large part to the fact the other team was playing two men down. But that’s beside the point.

It was nice to run again. I felt hungry afterwards whih is good and I’ll sleep well tonight. It was a healthy choice and I’m glad I went.

What I gathered from my mom and Tiffany is that Claire’s agitated states are moderating very well. Controlling the stimuli around her is helping her brain sort itself out. We’re seeing her range of motion improve in her limbs due to her hard work. We are more encouraged every day.

This coming week will be a week of bigger updates after we have our first Care Conference. Thank you for indulging some of the posts about me that lack some of the Claire details. We thank you for your prayers and support.

Claire had an even day. Ours was the same until tonight. We took the big step of leaving Claire in the capable hands of my mom for the night. For the first time since May 29th, Tiffany and I are at home in our own bed. And Claire’s not here.

We managed to stay busy for most of the evening knowing that at some point we’d have to go to bed. We knew what was waiting for us. But we can’t help talking about Claire and being away from her throws open the paths to menacing thoughts.

How can we keep living our lives? Coming home to the remnants of our past life allows us to slip back into rote habits and mechanics. Tiffany drove home first. After parking and getting out of the car, habit took over. Before she could stop herself she’d opened the rear passenger door. But Claire wasn’t there. It’s these small things, the things to which we’ve grown accustomed as a family that hunt us  when we’re at home. We know we have to go on living. We just don’t want to without Claire in our arms.

We are thankful and hopeful she will rejoin us. That doesn’t ease the pain today. And as we dwell on how much we miss her, we start to ask more sinister questions. What could we have done differently? Why didn’t we pay more attention? How could this have happened? We don’t feel like this is our life. This isn’t how it’s supposed to be.

These are self indulgent thoughts. It happened. The tragic events are no longer grim because death doesn’t stalk Claire right now. But they are a source of guilt, pain and anguish. It’s these idle times that test us. While escaping to sleep may be advisable, wrestling with these thoughts feels like a form of penance: we seem to try and convince ourselves that Claire’s recovery will be directly proportionate to the pain we self inflict. In the back of our minds we believe that the closer we stay to our emotions, the closer we are to the raw wound, the closer we are to Claire. I feel myself doing it to keep from slipping back into a routine. I don’t want a routine absent of Claire. So the more I keep my emotions volatile, the more I can protect from deceiving myself that everything is OK. It’s my way of staying close to Claire when miles separate us.

My self indulgence can’t last long. For one, I don’t find it to be healthy. More importantly, my life has to continue: Autumn and Heidi deserve an engaged, positive father. They need that. Tomorrow is Autumn’s first basketball game. We’ve been working on defense and offense this week and she’s anxiously excited. Both Tiffany and I are going to watch her play. We are excited for her, will cheer loud and let ourselves enjoy watching our oldest play. We’ll just make sure and save a seat for Claire.

The respiration therapy we started yesterday is producing a positive outcome so far. The only element we’ve employed to date is the use of a percussion massage on her back and chest. It has done an effective job of making the congestion more loose: Claire has been coughing without gagging and hasn’t thrown up since yesterday.

Claire is very sensitive right now to any kind of stimuli. I spoke with the doctor this morning and discussed strategies to avoid over-stimulation. At the top of the list is limiting visitors. We’re playing soft music right now, the blinds are drawn and she’s tucked in to bed. It’s been a while since we’ve had a baby, and those first three months of infancy memories are coming back.

The frustration I felt yesterday has abated somewhat after my discussion with the doctor. We also got our appointment for our first care conference set for Tuesday at 11:00 AM CDT. The doctor told me that they are still in the evaluation phase with Claire and waiting to see how she responds to different tests. Her agitation continues, albeit at a lesser degree than yesterday’s, and that prohibits some therapies. He did indicate that he is happy — a word he told me he regrets using — to see that her muscle spasticity is not as rigid as expected. He also encouraged us to continue bringing things up like the respiratory issues because it helps them deliver care.

The care OCH delivered this morning was again with occupational and physical therapy. Claire did better today than she did yesterday: she wasn’t as agitated and the therapists were both able to get her to  calm down completely at different points during the sessions. The goal right now is to stimulate her muscle groups, theoretically hoping to trigger her neurological and muscle memories of what they could due prior to the injury.  The other benefit is that Claire’s range of motion will be improved and muscle toning will be avoided. Aside from the sessions, Tiffany and I will be doing the exercises with her twice during the day.

I anticipate another update later today. Thank you for your thoughts and prayers.

Tonight is my first night with Claire at OCH. I’m enjoying my Salisbury steak and powder mashed potatoes as I write this. OCH is having a Father’s Day meal downstairs, but Claire has had a difficult day and I’m not comfortable going down to grab a slice of pizza. So I’ll stick with my steak and Claire with her Ensure.

Most of the activity at OCH has been directed by Claire. The therapy sessions have been minimal so far as the OCH team waits for Claire to heal a little more. There’s not timetable on how long it will be and that uncertainty is starting to take a toll. We made the transition to OCH because the professionals (and parents) were eager to get started on rehabilitating Claire. Action has lacked. I’m trying to parse together what percentage of my urgency is due to being an eager parent and what percentage is due to valid concerns. I have to remind myself that it’s only been two and a half weeks since the injury and only three days that we’ve been at OCH. Those reminders become less potent with each day.

And each day brings new challenges. Claire threw up her breakfast Tuesday morning right before being transported. It happened again yesterday and twice today. The pattern is always the same. Claire coughs, is unable to expel or swallow the respiratory secretions, subsequently gags and then throws up. It’s painful to watch her struggle as her cheeks flush and her eyes begin to water. We discussed this pattern with the charge nurse and will begin some respiratory therapy and a new medication to help with the nausea and secretions. I hope we start tonight.

We will be starting additional medications on Monday as well to make Claire more alert. She will be receiving some meds that increase her dopamine levels. The providers were waiting to give this to her until week three to make sure her brain had time to naturally heal itself. They feel comfortable administering the drug next week in an effort to exercise her mind. We’re looking forward to next week because it seems the rehabilitation plan is set to begin in earnest then.

I intend to speak with our social worker tomorrow to discuss Claire’s plans. We have been told that we will have our first Care Conference next week on Tuesday or Thursday. I can’t wait that long. Between my Salisbury steak and this paragraph, I got a chance to go down and grab some of the aforementioned pizza while a nurse was in with Claire. I spoke with another couple that have been here since Mothers’ Day. Their son is a triplet member and has had some severe respiratory difficulties. They get to take him home on July 6. They were kind enough to share the wealth of their knowledge before they depart. They encouraged me to contact our doctor and/or social worker and voice our concerns about the pace. They shared our early concerns: one lesson learned is that they wish they would have talked to someone sooner.  They had a similar experience to our PICU family with their NICU family: it’s hard to match the level of care when the bar is set so high. From what we’ve heard — from friends and comments here alike — is that OCH can match that level. I’ll be discussing that with them tomorrow.

Thank you again for all your prayers and support. Please pray for wisdom and tact for me and Tiffany as we talk with Claire’s care providers tomorrow.

This morning I got to go on a shopping spree that Tiffany has long wanted to direct. Claire is wearing clothes again and we found that the buttons and zippers on regular clothes were too cumbersome. This warranted a new wardrobe. Claire has always worn hand-me-downs because of her two older sisters, so Tiffany hasn’t had the opportunity to buy new clothes for Claire as often as she’d like. And now that she needs new clothes, I was the one who got to pick the ensembles. TJMAX and Ross were my first stops today. Tiffany begrudgingly commented that I’d done a good job. But she couldn’t say it to my face. It was an aside to Claire: “I guess Daddy did a good job getting you nice clothes.”

Tiffany did a good job too. Today was my first day heading back to the office for a few hours. So Tiffany was my eyes and ears at OCH. Claire had a number of evaluations scheduled today to determine her baseline capabilities. The OCH team will use these tests to set her development goals. This is what she gathered from the day’s activities.

Claire met with the speech therapist followed by the neuropsychologist. Both were testing to determine the coma level at which  Claire is functioning. From a medical perspective, a coma is not just a deep sleep. There are different levels to indicate response and therapy needs. OCH uses the Rappaport Coma Scale that measures how Claire responds to sound, light, smell, touch and pain. We learned that Claire is right on the cusp between level one (near coma) and level two (moderate coma). She is inconsistent or partially responsive to stimuli and not responsive or inconsistently responsive to simple commands. On the one hand, it’s disconcerting to hear that Claire is still mildly comatose. On the other it bears reminding that the insult to the brain took place just over two weeks ago. The speech therapist mentioned this to us: she said the fact she received the injury just over two weeks ago and is now at OCH shows she is doing well. Doctors will slow play Claire’s speech therapy as the time from injury lengthens, and she becomes more responsive to stimuli.

Claire met with the physical and occupational therapists today as well. Physical therapists tend to focus on the lower body while occupational therapists focus on the upper. Our first few days will be focused on work with these two areas. Because the injury is still so recent, the rehab can’t begin in earnest until Claire is more aware, so these sessions will be limited to 30 minutes. The majority of Claire’s work will take place in her room with Autumn, Heidi, Mom, Dad and both grandmas as coaches. We received a handout of stretches and exercises. We were both eager to get started. Claire? Not so much.

Claire’s upper respiratory congestion continues. It takes time to heal from intubation, so the doctors are evaluating some respiratory therapy. Repositioning Claire seems to help get rid of her squeaks and pops, and we hope they go away soon. It will help her sleep much better. It’s hard to see her exert so much effort between breaths.

As I mentioned earlier, today was my first day back at the office, albeit for an abbreviated visit. I felt odd. Not bad or good. Just odd. But seeing my team and friends was good. They’re good people, and I’m glad I know them. My office neighbor often mentions she is loud. I was glad to hear her laugh through my wall today. Each of them downplays what they have done for us these past two weeks. They’re being modest. They have sought to protect me and my family and give us space to grieve, reorient and fight for our daughter. They’ve been brilliant.

Thank you again for all the prayers and support. We hope to have some good updates in the next few days.

We’ve tried to keep track of all the people at Medical City that played a role in Claire’s recovery to date. There will be spots where our memory fails us: please forgive us if your name should be in that spot. We are forever indebted and grateful for what the administrative, nursing and doctor staffs did for Claire and our families for the past two weeks.

This letter marks the beginning of our thanks to the following (please forgive our poor spelling):

Doctors: Olsson, Sandel, Rhee, Fanning, Matson, Lanoue, Majeed

Transport Team: Ken, Misty, Jason

Nursing: Dalia, Sarah, Andrea, Kara, Christina, Eziaha, Andrew, Jimmy, Linda, Tai, Carla, Lauren, Carmen, Elaine, Marina, Asia, Susan, Janet, Candice (Nurse in Training)

RTs: Sheila, Tina

Chaplains: Brian and Jim

PT/OT: Erin, Kayla

Child Life Specialists: Margherita and Brittany

For legal reasons, and because some people bent the rules for us, we will be sharing some of the stories without the names (we don’t want to get anybody in trouble). Know that while we met under the worst imagined circumstances, we are so blessed and thankful to have met you.

The night nurse that was with Claire nearly every night became a face of hope for me. I was comforted whenever I was in the room with her: she talked gently to Claire and comforted her when she was upset. On the night before extubation while we were testing Claire’s ability to breath on her own, I didn’t sleep. Claire was initially having a hard time breathing and her breaths per minute average kept dropping to four, then two followed by a flat line. I could feel the stress flowing through my body. What comforted me was watching the night nurse show the same concern. She called the respiratory therapists and doctor and protected my daughter. I will always remember the nights that she was Claire’s angel.

The cult of personality in the PICU is amazing. We told our doctor last night that the care from a medical and emotional perspective was unparalleled. We know that the phrase “we couldn’t have done it without you” is hackneyed and tired, so we won’t say that. What we will say is that we are so glad that we did this with you: you equipped Claire for recovery during these first two weeks. You equipped us to begin caring for her and gave us the tools for the long road ahead.

You gave us the chance to begin putting the pieces together as a family. On a quiet Sunday, a rebel doctor and group of nurses let our daughters see their sister again as she took wagon laps around the unit. You allowed us to be together as a family again for 30 minutes. We got to watch our daughters encourage each other and give Claire strength. It’s so satisfying knowing that you shared that with us. Autumn and Heidi thank you for sharing popsicles with them too.

The last week was particularly encouraging following the first week of dim uncertainty. One nursing duo gave us strength each day as they shared in the small bits of progress. One nurse shared her excitement with us when she described the different types of cries and sounds Claire was starting to make. We were always looking for the slightest signs of progress: it made us cry when we heard that someone else was being as attentive as us. Her story made us cry more.

When we entered the hospital, we needed professionals to save Claire’s life and make sure additional injury didn’t occur. The PICU were very professional. As the last two weeks evolved, however, we also needed more and more emotional support. The PICU were more than professionals. They were advocates for Claire and friends for us. They shared in our despair and hoped to be astounded.

We got many visitors while we were in the PICU. Family and friends were joined by other PICU nurses and doctors who would come in on their off days or when stationed in another unit to see how Claire was doing. This meant a lot to us and you are always welcome to stop by wherever we are and check on Claire.

These stories just begin to describe the two weeks at the PICU. Other stories will come to mind and we will share them as they surface.

When this began we had a small Texas family. Now it’s bigger than the one in Colorado. We already miss our PICU family and will see you soon.

And Dr. Sandel, I owe you a bead.

We’re at Baylor Our Children’s House which will be referred to as OCH going forward. We’ve been admitted, signed numerous forms and registered for our first meal. After our new family orientation at 1:00 PM CDT, it will all be official.

It is a bittersweet move because we had to leave our Medical City PICU family behind. I will have one more update later today regarding those wonderful people. We made sure to get one last parting shot of Claire in her room.

We had been cautioned that we may be sharing a room at OCH. We’re not! We have a double room right now all to ourselves. I don’t expect it to last for the entire rehab, but it’s nice to start out with some privacy.

Claire has always been strong-willed and never hesitated to share her displeasure. She made sure everyone knew she was uncomfortable during the transport.

The transport took a lot out of Claire and she was eager for a nap when we got settled in the room. We’re glad she is sleeping and sounding so much better as she dozes. Her lungs aren’t as heavy sounding and she’s getting better rest because of it.

Thank you for your prayers during the transport. We have a long road ahead and we hope to have good news to share for most of the steps on the way. We aren’t naive enough to think it will all be rosy, but we take comfort knowing that we have such strong support and hopes behind us.

We’re leaving for Baylor in about an hour: the scheduled departure is 10:00 AM CDT. I don’t anticipate being able to give another update until later tonight. Please keep us in your prayers today as we get Claire settled and we meet with the team at Baylor. I anticipate that we will be having some candid, sobering discussions today. It’s going to be difficult to hear, but we will be reminding ourselves that we are hopeful Claire will defy expectations.

Talk to you soon.

Today has been spent anticipating and preparing for our move to Baylor Children’s House tomorrow. We don’t know what time we will be making the transfer so we’ve been taking the time to clean our courtesy room and transport the generosity of others back home.

Tiffany and I made our first trip back home together. We knew it would be a difficult trip. We busied ourselves as much as we could while we were there. It was therapeutic to think that by organizing the house some we were bringing a little bit of sanity back into our lives.

Claire has started varying the noises she makes and we are picking up on the different emotions and messages she is communicating. Consistent with her ability prior to all this, she is very good at communicating her disapproval. Christina, one of her nurses today, told us that Claire yelled at her when she started to move Claire back to the bed. That sounds about right.

The next few days will be hectic as we get on-boarded at Baylor’s and figure out the routine for the next six weeks. Once we have an idea of how things will operate, we will let you know when visits will be good to resume. We thank everyone who has visited during the last two weeks while we were at Medical City. Your support has been overwhelming and encouraging. We are eager to see you again at Baylor’s.

Thank you again for your prayers, hopes and support. I am hopeful for the updates to come over the next several weeks as Claire and our family start the intensive rehab program. Talk to you soon.