The You-Know-What Just Hit the Fan

The diaphragm below Jaisal's right lung lobe is experiencing paralysis. This is almost certainly a result of the transplant surgery. Whether the paralysis is permanent or temporary is unknown, but the team tells us that usually it is temporary.

This sucks on so many levels. The primary course of treatment is to wait and see if the injury heals. Waiting means pressure-induced breathing for Jaial through a pressurized face mask - the cpap or bipap or whatever they call it. It means Jaisal is completely limited in his motion, in his vision because of the size of the face mask, and must manually have his secretions in his lungs suctioned out at 4-6 intervals because he can't cough and move like a normal kid.

If the diaphragm doesn't just "wake up" from the injury, a surgery to basically tack down his diaphragm to allow for full lung capacity is our primary option. Surgery for an undernourished, immune suppressed kid is kind of a big deal. There are some places that perform this surgery laparoscopicly, but we don't know if CMH is one of them. We'll hopefully get to talk to the general surgery team tomorrow.

It's really hard to see the bright side right now. We're guaranteed to be in the hospital for at least 7-10 more days. Even if surgery becomes our only option, it probably won't get decided for another week. At which point Jaisal will have been wearing this crazy mask for 9 days. That will mean he can't feed orally and likely will need speech therapy after everything is done to learn how to eat by mouth again; there's a decent chance he'll need it already. Jaisal likely will have skin break down on his face and body from having to wear a pressurized mask and being in bed for a prolonged period of time. This is just a horrible thought. Because Jaisal won't be using is muscles, he'll likely lose developmental skills and require physical and occupational therapy to regain the skills that he already knew and catch up to where he should be.

Practically speaking, we're happy to have a diagnoses and a general plan of action. Practically speaking, we're happy his liver is doing well. Practically speaking, he will be fine in the long run.

Realistically speaking, I am angry, upset, frustrated, etc. etc. We just can't seem to catch a break and my optimism is waning in general. Without this complication, Jaisal likely would have had a remarkable recovery after his transplant. He went in strong and relatively well-fed unlike many biliary atresia kids. Now, however, it seems reasonably certain that we are going to do a massive backslide on every front. We worked so hard to keep Jaisal nutritionally sufficient pre-transplant to avoid him having to be tube fed. As any nursing mother can appreciate, I pumped exclusively for nearly 11 months so that we could get Jaisal to eat a special formula that tasted like crap, but was passable when mixed with breastmilk. Now Jaisal is being fed intravenously and through an NG tube into his stomach. He will likely need the latter after this is all said and done because he won't know how to eat any other way until he is retrained. We were so proud of his manual dexterity and being able to walk pre-transplant. All his mobility skills will be gone and need to be relearned.

It feels like a massive blow. We tried to do everything right and despite knowing that this transplant could have massive complications, never expected this.

We know that likely things will be fine and we have to focus on the long run. We hope that someday this will be a blip in time after many years of healthy life with Jaisal. But right now it's just really hard to look past the immediate future. Right now, we can't help but wonder what we did wrong so that our little man has to go through so much and I wish so much that I could take all this discomfort and pain from him.