The past few days since the last post have been up and down. He is being monitored very closely and being given a ton of medication to prevent things like Graft vs Host Disease (GVHD),   

GVHD is a condition that occurs when donor bone marrow or HCT attack the recipient. This  can occur at any time after a transplant. However, it's more common after the marrow has started to make healthy cells. The condition can be mild or severe.

When I first started looking at transplant, 13 years ago when he was an infant, GVHD scared the crap out of me. It seemed to be a lot more severe and common, making transplant look not as desirable. Nowadays, however, after years of experience and information sharing across the globe, safety protocols have been put in place  making GVHD less of a threat during and after transplant. Basically the benefits of transplant, out weigh the risk for our family.

Dr. Debaun, who is an internationally recognized physician-scientist whose advocacy and research have resulted in fundamental advances in medical care of children and adults with sickle cell disease (SCD), came to visit us! This was a huge and welcome surprise!

I attended a one-on-one class led by a registered nurse with 20 plus years experience, on caring for Trevor's feeding tube and Hickman line once we leave the hospital. I learned how to remove and  insert a new tube into his nose if needed, as well as how to administer feeds and give medicine through the tube. She also gave me tips and tricks on how not to get the tube clogged, which is evidently a thing. With the Hickman line, she taught me the steps on how to keep your area completely sterile and how to change the dressing, flush the line and change out the claves. 

Trevor has been spending most days playing RUST on PlayStation. He excercises by walking the unit and getting on the stationary bike. His friends at home are a big support too, playing Roblox and other online, multiplayer games.