Friday, June 18: Update 2

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.

Friday, June 18: Update 1

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.