So today we got a phone call ..some changes on his IV meds in order to bring down the number of EBV cells (eppstein bar virus) and then get that under control. Further, an additional mentioning of another biopsy will perhaps be necessary to “look” at the liver. And if that isn’t enough, the dr. mentioned that Lennon will more than likely require another transplant in about a year..
Honestly, I don’t know how or what I am feeling, nor what I am supposed to be feeling. How am I, as his mother am supposed to react and handle all of this again and again…seriously? Another liver transplant?
So here we are with maintaining medication via IV at home, change in his diet and feeds and the amount he needs to drink. Watching carefully for lethargy and behavior changes. Keep an eye on any lymph-node developments and watching him slowly master mile stones typical for younger children. His speech still delayed and his emotional stage still much that of a 3 or 4 year old. But in the past weeks he’s put his own pants on..and that is success.