Sir Oliver Update

Sir Oliver is being a finicky dude. Jaisal's repeat labs showed some more elevated numbers. Nothing alarming or drastic, so it could be the cold or it could be something else. We'll repeat in a few weeks and then go from there. It looks like Jaisal will have to be back on a once a month lab schedule for a while.

The labs concern me a little bit. If they continue to go up, Jaisal will need another biopsy. That would make all of us very unhappy. I'm also concerned about the general up and down and moderately persistent elevated labs and what it means for the long term health of his liver. The funny thing about pediatric liver transplant is that there are no good answers. There isn't a huge number of children that have had transplants and the transplants themselves have only had good success rates for the last 20 years.  Transplant pharmacology has come a long way, but even the immune suppressant regime used varies by hospital.  The current plan to use tacro on kids is relatively new. We just don't know what his numbers (or these meds) really mean for the long term. I recently read an article about how a significant number of pediatric liver transplant patients show signs of fibrosis 5 years out from transplant. This liver dysfunction isn't correlated to bouts of rejection or even if the child turns out to be graft tolerant without medication. Thus far, this study shows that some of the main factors causing fibrosis are age at transplant and age of the graft. Well crap, Jaisal was young and Sir Oliver, well let's just say he was an experienced gentleman.

I know that we will have "stuff" to deal with our whole lives. I know that the world of medicine and transplants is going to evolve in the next year, 5 years, and beyond. The unknown though is still the hardest thing.  I worry a lot about the healthy part, even sometimes worrying about what my definition of happy and healthy for Jaisal is. Time will tell.

On the plus side, Jaisal's BP was within the normal range so he does not have to go back on blood pressure medication. Yay for that. Of course this happens when administering meds is no longer a problem for us. Jaisal loves his meds these days. All I have to do is fill up the oral syringe, hand it to Jaisal, in his mouth it goes, and he pushes the plunger. He actually asks for more. Even after I give him the horrible chalky milk of magnesia!  Little man is just so awesome.

We also had an evaluation with a developmental psychologist this past week. This evaluation was a benefit from our previous enrollment in the BA study at Children's. Jaisal had to go through a series of physical tests (running, hopping, etc.) and other tests related to sizes, colors, counting, etc. We have not received the full report yet, but quick feedback says that Jaisal is developing at a perfectly normal pace and in some things is even ahead of the curve. Yay! And phew! BA plus transplant plus a reasonably rough recovery did not negatively impact Jaisal's development.

I mean we kind of knew that. Jaisal speaks and understands 3 languages (Unfortunately no one in his life speaks all 3 languages so it is a bit of a guessing games as to what he is saying. For example, we got in the car yesterday and Jaisal from the back seat started freaking out saying "Daddy, pear" repeatedly, before switching to "Mummy, pear." I eventually came to the realization that he was mad that we had not yet put on our seat belts and was yelling at us in Gujarati to wear while pointing at the seat belt. If his commands had been in Spanish, we would have had no idea what he wanted.) He is always running and jumping. He recites the full alphabet and can identify most of the letters. Etc. Etc. It was nice, however, to get confirmation that we weren't just being overly proud parents.