Saturday, June 5: Update 2

I thought I’d start this post with an update on Autumn and Heidi since a number of you have asked about them on the comments. Both are doing marginally better than they were during the first few days. Our good friends, Jon and Becky, took them home tonight to escape the hospital. I heard from Jon earlier and he reported that Autumn was having the harder time and asking for some alone time. Heidi has been more herself. Both are emotionally on edge and were trying to discuss the events in due course and distract when prudent. We’ve had a number of candid and sobering discussions this week. The situation has given rise to some separation anxiety for both kids and parents. Tiffany and I would prefer to have them close – they give great hugs – but we know that it is important that they escape and act like kids. They don’t always understand his dynamic and we hope it pays off long term. Needless to say, both Tiffany and I foresee some therapy in the coming months for the entire family. All in all, Autumn and Heidi have been precious and strong. We can’t wait to sleep under he same roof again.

Regardingan update, there is still not much to relate. I was overly optimistic about the ventilator use being discontinued today: we are close to where the stats need to be, however, the removal will involve a much more involved testing phase than I thought. While I was naive about the process, I understand the endgame: the goal is that once the tube is out, it stays out. There are a couple of additional items the doctors will be looking for to make sure that occurs. The time it takes for those items to appear could be days away. So updates may be shallow for a while.

The doctor took note of Claire’s feet and hands tonight as well. They are a little stiff from the posturing so she will be ordering some braces be made for her legs and arms to keep them from flexing so aggressively.

The majority of our discussion was focused on long term care. I hink both Tiffany and I have avoided this somewhat because we still have such a limited view of what we’re up against. The doctor was very candid about nutrition options and encouraged using the “button” inserted directly into her gut.

We also began to discuss rehabilitation options. It’s hard to wrap our heads around what this will entail because we don’t know what Claire will be working with. Will she be able to talk? Walk? See? Comprehend? It’s all a mystery right now, so talking about it felt premature.

We talked about it anyway. While we understand that there willbe rehab, both of us are still of the mind that the doctors treat according to the averages. We still hope for an exceptionlly above average recovery. We are asking for a miracle and to get one means that Claire will defy the expectations. And so we wait.

Thank you again for all the thoughts, hopes and prayers. As we settle in for the long haul, we understand that the acute feelings you may have shared with us for the last week being to take a toll. We thank you for continuing to keep us in mind as the horizon expands ahead.

Saturday, June 5: Update 1

Today has been emotionally challenging. My mind has been regressing to the things we did with Claire before last Sunday. Needless to say the emotion expended today has been tiring.

The catalyst was this morning’s visit with Claire. She was having a tough morning as the sedative was wearing off. We’ve been warned about some of the things that denote neurological destruction, and Claire was showing some of them. When the brain is injured, there can be miscommunication between it and some motor functions. This manifests itself as ‘posturing’: her limbs will tense and turn in toward her body. When she is agitated, she exhibits some posturing. While she was having her lungs suctioned this morning, she started posturing. But as the late Billy Mays would say “That’s not all.” During the suction Claire reached her left hand up to her throat for the tube. The nurse jokingly said, “I’m going to have to put those restraints back on.” It was encouraging.

I also spoke to the doctor and asked about the posturing. In short the verdict is still out because posturing could just be symptomatic of her functions coming back on, not necessarily an indication of how things will always be. We’ll wait and see.

This time was punctuated with some acute memories and many tears. It felt good to cry.

The tears continued at my next visit. She made eye contact with me. Her eyes weren’t listless as I has seen them before. Her heart rate was at 160 bpm, and I was talking to her. As I looked into her eyes and smiled, her pupils closed down and fixated on my eyes. Her breathing was very high, and as I spoke to her, both her heartrate and breathing started to moderate. As I stroked her forehead, her eyelids slowly dropped, and she went back to sleep.

I held my emotions at bay until we left the PICU where I expressed my relief with more tears. It wasn’t much. It was enough for today.