Just a really quick update before I grab some sleep while Ron pulls night shift at the ICU. Despite ongoing agitation, discomfort, difficulty breathing, and delirium related to either sleep deprivation, toxins from his kidney malfunction, or what they call “ICU psychosis,” Tyler made some medical gains today! It appears the Defibrotide is kicking in because Tyler lost 10 cm in girth and several kilos in weight since yesterday. While his kidneys now look fairly bad, his liver is looking better. There was some talk of dialysis today, but it looks like that’s been averted for now.
We encountered some problems in that Tyler’s central line became clotted last night, and he had to have two IVs placed in his hand to receive his medications and blood products. It was determined his Hickman needed to be “rewired,” so this evening he went to the OR for both that procedure and for a skin biopsy. The rash and high fevers continue, as does fluid restriction. Tyler’s heart and respiratory rates are very high, even on oxygen. Since his breathing got worse as the fluid started to drain off him, they are now thinking his difficulty is due to low blood volume and fever. Until his capillaries stop leaking, he will continue to have low blood volume. In the meantime, he’s at perpetual risk for the remaining fluid to invade his lungs. We’re banking on that not happening and for things to continue to progress in the right direction. There’s so much more to report from the last 36 hours, but that’s it for now. In my next post I’m excited to report about an amazing way our church blessed us this evening to help us through Tyler’s days in the ICU. More tomorrow…