Today is my birthday. I think that made everything that happened today that much more unbearable. Yesterday, Tyler seemed to do somewhat better throughout the day as far as his agitation went. His fevers continued to get higher and required wiping him down with ice water. We really thought he would sleep last night, but instead, he grew more restless and upset as the night wore on, and his oxygen saturation rates decreased into the 80s. There was talk of intubating him (putting him on a ventilator), but thankfully that didn’t happen. They did, however, increase the flow rate of his oxygen. The other concern that arose last night was his increasing kidney levels. To protect his kidneys from requiring dialysis, they increased his IV fluids a bit. This in turn causes more risk to his liver and lungs, but whichever organ is having the most trouble at the moment is the one that gets the preferential treatment, and right now that’s his kidneys. Tyler is completely NPO, and when he’s lucid, he begs for ice chips and water. It’s heart-wrenching!
Regarding his agitation, which is causing him a lot of suffering, Ron and I have been advocating since he got to the ICU that the Ativan they give him isn’t working to calm him down. Finally, this morning they tried Versed, and it has done the trick. He got some rest today. This evening, he is getting agitated again, so we’ll see what the night holds. Nights are definitely worse for him. But even to have those few hours where he seemed more relaxed was a great birthday present for me. The other great birthday present was to hear the doctors say they are confident that the defibrotide is working on Tyler’s VOD. While they are concerned about his lungs and pneumonia, they are also confident that his rising white cell counts will eventually clear it up. On average, he is breathing about one breath per second, which is exhausting for him and his heart. Both his VOD and fungal pneumonia are expected to improve, but both will likely take weeks. We’re in here for the long haul, but as long as we know that things are headed in the right direction, we can do this.