This morning I had to have Xavian at clinic for lab draws at 8:30am. We got there and had the blood drawn in no time. He has gained one pound! We waited a bit and got called back to a room. The nurse told me that Xavian was very neutropenic. His hematocrit levels were down from 29 (when we left the hospital on Wed) to 22. One of the doctors came in and told me he would have to get some red blood before we left. Ok, no big deal. The thing is they didn't have blood ready for him so we waited nearly 1.5 hours to have the blood delivered. Xavian's blood type is O+ and he is CMV- so, it takes a little longer to match him. If you know you are CMV- please donate. Most infants/children are negative and those on chemo NEED blood and/or platelets. You can also donate for a specific person (Xavian or Ryan). Anyways, Xavian was finally hooked up and started the transfusion at 12:45pm. The transfusion wasn't complete until 4:15. Other patients came and went...we were the last ones to leave. Only a few nurses were still there when we left. We will have to be back at clinic on Monday to check his levels again. If his numbers aren't up to a certain level they will post pone the last round for a week until they come up. We have an MRI scheduled for Wednesday at 3pm. This will take place even if they post pone the third round. I am a little anxious for the MRI. Our nurse practitioner also said they may lower the dose of chemo that Xavian has been getting. I'm not quite sure why that is though.
Xavian and I finally got home at 5pm. Just in time to run next door and pick up Dante. Our neighbors have been so generous and helpful while we are going through this. Our friend had to go substitute at her daughters school so she just took Dante with her. Matt said she was a little anxious about having him there, she wasn't sure if he would get upset not knowing her that well. When I picked him up she said he is so laid back that he just went with the flow (they were on the go all day). He didn't have a nap at all so I am hoping he sleeps well tonight.
We don't have anything planned this weekend. We need to keep Xavian in since his immune system is pretty much shot. We will just be at our new house enjoying our new furniture as a family together again.
4 months ago