I can't believe it's been 4 months since our last post. This winter was busy for us in a "normal family" kind of way. Mostly, we stayed in our bubble at home which allowed us all to stay healthy (yay!) We played in the snow a lot and both kids got to try skiing. Katie hit the magic carpet at the Middlebury Snow Bowl a few times (she loved it) and Porter kicked around in our yard.
Yesterday was our most recent blood draw visit and there's some exciting news to report on that front. Porter has had a central line since he was four months old. He had a Broviac catheter for 10 months and that was replaced by an infusaport which he has had now for 14 months. During our pre-transplant evaluation the team in Boston told us that they generally remove central lines by 6 months post-transplant because they increase the risk of infection. The team decided to delay removing Porter's infusaport until his ANC stabilized because of the need for frequent blood draws. We knew that we needed to ensure that Porter would tolerate peripheral blood draws before the port could come out. So, our UVMMC nurses and child life specialists made it happen. Porter is a peripheral blood draw rock star now and his infusaport is scheduled to be removed in mid-May.
The transplant team has been telling us for months that they only need labs once each month (more frequently if they make changes to his medications). But, up until the middle of March the hematology folks had been requesting labs every week. Finally, this past stretch between lab tests was 3 weeks--the longest Porter has ever gone between blood draws. Unfortunately, Porter's liver function tests were up (likely because he has a cold right now) so we have to go in again next Monday. Hopefully, next week's labs will look good and we'll be able to hold off for another 3 week stretch until liver clinic in May.
Nutrition is our biggest challenge now with Porter. He still does not have much interest in eating so nearly all of his food goes through his G-tube. We have had some success in stimulating his appetite by slightly reducing his calories via G-tube but even with the increase in appetite, and therefore eating, he tends to lose weight. The doctors don't want to see any dips in his growth chart so we have to go back to total tube nutrition. It's hard not to get frustrated.
We've learned recently that pediatric liver transplant recipients who take Tacrolimus as their immunosupressant commonly develop new food allergies. It is possible that the allergy develops because the donor was allergic (they don't collect that information so we don't know if Porter's donor had food allergies). More likely, the new food allergies develop because of the immune properties of the new liver and the way that tacrolimus effects the immune system. Guess how we found out? Porter suddenly developed allergies to milk and egg. Yup. All those times when I wished that Porter would just have a food allergy instead of a UCD came back to bite me. Hard. So, he was already allergic to peanuts and tree nuts. Now milk and egg are out. We keep our benadryl and epi-pens close now. Who knows when another allergy might develop? Splendid.
Even with Porter's food allergies life is still better for us post transplant. We sleep better. He's developing normally. We can breathe. I won't complain (not out loud, anyway). We've got it pretty good.
