Christmas

Jaisal got gifts galore! He even enjoyed tearing off wrapping paper. It was a lot of fun to watch him squeal with joy and enjoy the new toys. I have no idea where these toys are going to fit in our home. I'm also proud to say that mine and Kirk's total toy purchase count for Jaisal to date remains below 20. You guys all spoil him so that we don't have to. :)

Beyond these moments, today was a bit of a downer. No matter how we looked at it, it was depressing to be in the hospital. We were exhausted from a long night with Jaisal and since we're still in the PICU  (and will be for the foreseeable future), we are limited in the number of visitors we can have bedside at one time and couldn't even all be together. It just didn't feel festive.

Plus, Jaisal's breathing issues are back in full force and the only course of treatment is time and respiratory support. The necessary time, however, could be two days or two months or an unknown amount of time followed by surgery. The waiting and uncertainty is brutal. I feel trapped in a bubble and it's really difficult to look at the big picture and not get bogged down in details. I miss time with Kirk. Even though we're both at the hospital, we're rarely together, since each of us tries to sleep when the other is awake. I miss my house. I've taken to calling the Kohl's House home. I even cleaned the bathroom the other day. I miss a schedule. I miss my dog. Most of all, I miss being a mom. I feel like 85% of my purpose now is medical related. I want to just play with Jaisal, to hug him just because not as a comfort measure in the hospital, and to just sit on the sidelines and get to watch Jaisal be a little boy.

I do try to focus on the many good health things.  I am ecstatic that things are going so well with Jaisal's liver. All of his labs are now trending in the right direction. Jaisal's bilirubin is the lowest it's ever been. Our kid isn't yellow. It's been a while since we're seen the "real" him. Jaisal is eating well. He's actually eating more than his goal and has gained nearly a pound in the last two days. For the first time ever he seems interested in food, which is so much fun.

Nevertheless, today, the day I thought we were moving up to the floor and closer to discharge, it was a little bit harder to focus on the good. Especially right now, as my little man sleeps wearing a mask that forcibly inhales and exhales for him because his own body can't handle those tasks without becoming exhausted.  Hoping this back step or halt in forward progress is short and I can bust out of my bubble......