It’s been a very hectic and frightening 24 hours, but I’ll try to summarize what’s been going on. Last night things were pretty touch and go with his pressures and sodium levels. The need to get his sodium levels up almost sent him to the ICU. The attending physician, Dr. Small, was concerned enough with what was going on that he came to the hospital in the middle of the night just to look at Tyler’s labs.
Tyler gained another two kilos of fluid today. He is very swollen and uncomfortable. An ultrasound of his liver revealed it is now enlarged. Along with the leaking capillaries and high bilirubin levels, an enlarged liver finally qualified Tyler for a diagnosis of VOD. Veno-Occlusive Disease can be life threatening post-transplant, but because they’ve been watching Tyler so closely, his is still a mild case. He now is eligible to begin the study drug Defibrotide. Defibrotide is not yet approved by the FDA but has been very successful in treating Veno-Occlusive Disease. Hopkins is one of the only hospitals in the country that has Defibrotide, so again we are so very blessed to be here!
Tyler was made NPO this morning which was very upsetting to him. He was examined by the kidney team, the dermatology team, and the pain team, and underwent multiple tests. When his pressures rose to a safer level, he was given Lasix to try to draw some of the fluid out of him. When his morphine was increased, he was consumed with itching, and that is not yet under control.
Tonight, they feel more confident that the delicate balance between his kidneys and liver has been achieved. He is again receiving his IV nutrition. Tyler’s ANC started recovering today, so now we await what’s to come with engraftment.