Jaxson had a good night last night and the bleeding seems to have stopped since they started him back on the octreotide. The surgeons here got in touch with the transplanting surgeons in Pittsburgh, and they recommended to put the octreotide in his TPN so he can be sent home If the bleeding stops. So, our doctors here called the pharmacy that sends all of his home meds & they can’t put the medicine in his TPN because there’s overfill in the bag (meaning what’s in the bag isn’t all that he gets, there’s leftover TPN every day) so they would have to add more octreotide than needed to make sure he gets it all. Anyway, that’s not an option because there’s a national shortage of this medicine so they absolutely don’t want to waste any. I think their next option is to run it alongside the TPN everyday through a separate line. I hope they’re able to do this because if this medicine helps stop the bleeding, and he’s stable then there’s really no need to be at the hospital.
I spoke with the transplant coordinator in Pittsburgh today and informed her that he has needed more blood & plasma transfusions so his wait list status still stands at a IB, which she said is the highest he can go. Again, he will be listed as this status for another week, unless another GI bleed occurs, or he needs to be transfused again. If he doesn’t, then he will go back down. Hopefully they can make an exception as octreotide is a medicine used only short term & that seems to be the only thing stopping these GI bleeds.
Despite all that’s been going on, and how frequently he’s been in the hospital the last two months, he’s still happy as can be and completely acting like himself. He has his moments sometimes, which he is 100% entitled to, but always bounces back to that smiley, blue eyed, blonde haired boy we all love. We are so ready to be discharged & await the transplant call at HOME. Positive thoughts that this is a possibility.