My last post was about Jaxson undergoing an enterectomy (removal of the transplanted small intestine). The anatomy of that is a little complicated now, but I will try my best to explain it. For reference, Jaxson still has his stomach, his duodenum (small part of the small intestine) and his colon. He also still has the donor liver, as that was not in rejection and he needs that to survive. The liver is connected to the small intestine by the bile ducts, and because of that, Jaxson still has the donor duodenum. Usually, bile would drain into the intestine and out through the colon. The surgeons did not feel comfortable connecting the donor duodenum to Jaxson’s native duodenum, so the donor duodenum is stapled off, and the bile draining into it can’t go anywhere. They placed a duodenal tube (it looks similar to a g-tube), exiting on the right side of his stomach so bile can drain out of it. He will likely have this tube long term. A few days after surgery, they noticed his liver numbers going up and his duodenal tube not draining as much bile as it should, so he had to have a biliary drainage tube placed. This tube goes into a bile duct, and exits in the middle-left side of his belly- it drains bile directly from the liver. They noticed that the duodenal tube was kind of blocking the bile duct causing it not to drain as it should, and they could’ve messed with that a little to fix it but it was too new, they didn’t want to touch it so they placed the biliary drain. This tube is likely short term. I hope I explained that right, and I hope I explained it in a way that isn’t too confusing. Jaxson will still be able to eat/drink as he did before (though he won’t absorb much and will likely be limited just as he was before transplant.) The surgeons told us Jaxson could be placed on the transplant again in a year (or sooner depending on his recovery/health).
He has been intubated and sedated for almost a month now, and he hates it- rightfully so. He’s had some problems with agitation and confusion because of the amount of opioids and benzodiazepines he has been on. He was on dilaudid after transplant up until a couple weeks ago, then they switched to fentanyl and then morphine. He’s also on ativan, ketamine and most recently to help with confusion & agitation, zyprexa. Because he has been on these so long, they also added methadone to help with withdrawals as they try to wean everything for extubation. Since adding the zyprexa, I have noticed a change in him- he’s definitely less confused. When he opens his eyes, he is actually able to focus and when he gets agitated he’s able to calm a lot more easier/quicker. I was really happy when supportive care, who generally manages these meds, came in today and said they were going to tell the nurses to start using the opioids as a last resort (because some are quick to give them to him as soon as he moves). I also really think most of his agitation is more from the breathing tube and being restrained than actual pain, but I understand that is not a valid reason to remove it. They had plans to remove it sometime this week, but a chest x-ray taken 2 days ago looked significantly worse than the one taken the previous day so that is being held off a few more days. His sister came last week and I think that has lifted his spirits a lot. While I believe her being here will be good for his recovery, I think right now it can be a little over stimulating for him so we only have her in there for a couple hours a day. I can tell he is sooo ready to play with her and love on her again. They pushed each others buttons, but were definitely inseparable before all of this. He has a birthday in a week and i’m hoping & praying he is awake & has the breathing tube out so we can celebrate it on the exact day! I wish I had more exciting things to update on & write about, but this recovery will be a slow (but steady) one! He is one tough warrior!