Today is Day 14 Post-Transplant. Tyler’s Veno Occlusive Disease worsened overnight and throughout the day. Despite repeat doses of Lasix, his body continues to retain the fluid leaking from his capillaries. He has gained quite a bit of fluid weight, and his belly is very large now.
This turn of events has brought his lungs into the equation, a dreaded possibility. The extra fluid is not allowing Tyler’s lungs enough room to expand, plus fluid is leaking into his lungs. He is laboring for every breath and is on oxygen. Also complicating matters is that Tyler’s counts are recovering much earlier than would be expected, and the new white cells cause inflammation, which is not helping his already inflamed organs.
At this point, Tyler needs the care that only the ICU can provide. They can try different drugs to get the fluid off him and put him on a ventilator if his lungs fail. It’s best to move him there in a planful way than in crisis mode. We’re hoping they can also keep him sedated enough that he won’t remember any of this horrible nightmare!
It is expected that Tyler will remain in the ICU for several weeks while his VOD resolves. Tyler’s social worker is trying to get us a room at the Ronald McDonald House or one of the other places parents can stay. As always, pray, pray, pray!