Busy Day

Apart from some serious fatigue on our part, today was a GREAT day. At about 4 am, we gave up on trying to keep Jaisal wearing the mask. As he stayed awake, he became increasingly agitated wearing the mask. (He has now only slept about 5 hours in the last 24 hours and that is with extensive coaxing by us.) After switching to the nasal support, Jaisal managed to go 7.5 hours without showing any signs of respiratory distress. That is awesome! Additionally, his morning x-ray showed that the top right part of his lobe is no longer collapsed. We're not seeing any changes related to his diaphragm, but we'll take the baby steps.

The conversation with the doctors this morning about the x-ray proved extremely educational. It seems that Kirk and I may have misunderstood, pretty dramatically, the treatment plan for Jaisal's diaphragm issue. We had understood that Jaisal would be need to have the breathing mask until his diaphragm healed or he had surgery to correct the paralysis and that timeframe could be 2 weeks to many months. The many months part scared us because Jaisal would be pretty limited in his movements and activities, requiring lots of therapeutic engagement to get him back to where he was before transplant.

In fact, we learned this morning that the mask treatment has nothing to do with the paralyzed diaphragm. It's all about the collapsed top part of Jaisal's right lobe and as soon as that stays open - typically with Jaisal getting stronger - that he may not need any respiratory support or minimal support that we could manage outside of the hospital to compensate for the reduced lung capacity. Of course, this is if Jaisal does get stronger and his breathing ability recovers, but he seems to be moving firmly down this path. I have no idea how the message from the doctors got so garbled, but for once I am glad for the miscommunication.

It's not to say that this diaphragm issue isn't really serious. If the diaphragm doesn't heal on his own, Jaisal will be predisposed for respiratory infections, which can be lethal for an immune suppressed person. Additionally, he would potentially need frequent respiratory support to compensate for the diminished capacity and could be limited in the activities he could do, resulting in all of the developmental delays we were afraid about. Or he could require another surgery. All of which are sucky potential outcomes, but we are uplifted that the breathing mask does not look to be a necessary part of our future.

Otherwise, Jaisal ate some solid foods today. He still has an aversion to drinking things orally, but we'll work on it slowly with speech therapy, We also are starting to help Jaisal move his arms effectively and bear weight on his legs with the assistance of occupational therapy and physical therapy. Over the last few days, Jaisal had one of his drains and two of his IVs pulled. It's much easier to pick him up now. He's also been transitioned to every other day labs because his liver function is stable right now. It still needs to improve, but it's where the doctors would hope and want it to be, Jaisal also continued to laugh, play, communicate more with us, have greater and greater stranger anxiety, and generally be awesome.

(As a side note, I am not sure why short hair is called mom hair. It is a PAIN to deal with. A few weeks before Jaisal's surgery, I cut my hair and donated it to Locks of Love for the 4th time in 11 years. I am thrilled to continue to be able to grow my hair so long, but I HATE how much work short hair is. Our hospital stay would be much easier if I could just pull my hair into a ponytail and I wouldn't look so completely and totally unkempt in each picture.)

Jaisal also got a visit from his Uncle Scott and Aunt Chris. We gave Scott his Christmas present. We felt this was the only way to appropriately show our appreciation for the man who saved our son's life.

We didn't really have wrapping materials, so we made to with what we could find around the hospital.

Our other options included wrapping the shirt in a face mask, using hospital linens with tubing from IVs, etc. I think we picked the best presentation.