Good day, everyone. Another 24 hour whirlwind of activity.
Counts: Platelets ~ 9, Hematocrit ~ 40, ANC ~ 109, Weight ~ 14.3
Gregory slept for a good portion of yesterday. We had a few hours, late in the afternoon where he was active and smiling, giggling. I haven’t been able to get him to the bath though, for the last several days. We have been doing warm, wet wipe washes. They are like baby wipes, but thicker. They are kept warm in a blanket warmer type thing. Yesterday he woke up with a classic GVH rash. He was started on Prednisone yesterday. Which comes with a whole host of side effects. One side effect is Prednisone induced Diabetes. His glucose levels are currently slightly elevated. They will be heavily monitoring them with the possibility of adding Insulin shots to his regime. One good side effect is that he is no longer febrile. AKA: he is afebrile. His temp has been between 36.1 & 36.5 C (96.9 – 97.7 F). Seeing him in the 97’s is totally normal. This is where his body likes to live. Another side effect is high blood pressure. Which he now has. They have added a medication to lower his blood pressure. Not quite sure which one, I will update when I know. Last pressure was 136/98.
Now for the truly yucky stuff. (I bet you thought THAT was enough.) CMV is a life threatening virus for bone marrow transplant patients. We all (usually) have it in our system or will have it. It has very few symptoms and usually lies latent in your blood stream. Gregory is CMV negative as is his donor. Well. They check for CMV twice a week. Gregory’s last test came back positive for a few CMV cells. Not enough to have the virus full blown. Just a few cells floating around. Except they can replicate and activate quickly with the outcome usually being death. It’s a pretty bad thing. Yet, there is a solution. They are aggressively treating him with Foscarnet. Which is a heavy duty anti-viral that will kill off the few CMV cells that Gregory has floating around. Except……. Foscarnet is well known for causing kidney problems. Gregory gets Foscarnet twice a day at 9:00am and 9:00pm. He gets a normal saline bolus of 130ml prior to dosing. This helps to flush it out of his kidneys and keep everything working correctly. If we could have some extra juju around those time frames, it would be greatly appreciated. While the side effect of this drug is pretty scary, the outcome of not treating the CMV is even scarier. You can get a kidney transplant.
Gregory had some time with the Physical Therapy team today and he will be seeing them 3-4 times/week. Thankfully his lack of fever has given him a little more energy. With the addition of a few more medications, though, I have no idea how this is going to shake out, at least for the next little bit. It truly is moment to moment. I knew about the possible Prednisone side effect, I just didn’t realistically expect them. I know that I can’t think too far ahead, but I am and it’s not a good place to be. I constantly remind myself to be in the moment. Which is also a reminder that since Gregory is napping, I really should try to catch a few z’s myself. Once again, should you have any questions, PLEASE feel free to ask. The dialogue really helps me, too. It also gives me ideas to journal about.
My brain is full and my heart is heavy. ’til later, gotta jet.