Wednesday, June 9: Update

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.

Extubation Time

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.