Wednesday, June 16: Update

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.