09 Nov Update
This weekend is an official “Leave Keegan Alone” weekend. No poking, no labs, just see how he does over the weekend. Mainly, we’d like to see him gain some more weight, lessen his diarrhea, and at least have stable blood counts on Monday. I think if his tummy doesn’t do worse and if he has no major fever spikes, then we can start the going home process on Monday. His counts were starting to go down again on Thursday, less than a week after getting two units of blood. If Monday they haven’t gone down any more with no blood being drawn since Thursday night, then home is a better option than staying in a germy hospital. It wouldn’t surprise me though if he needs blood before we leave. That requires at least 24 hours of observation afterwards. It will take a few days to get everything in order to go home though. We have to secure the TPN delivered to our house everyday. We’ll need a home healthcare nurse to come to the house daily since we’ll be using his port for TPN and lipids, which of course requires a battle with our insurance company. We’ll have to get new prescriptions filled. You get the idea. I hesitate to even write the word “home” here because I’ve probably just doomed us for actually getting there. Oh well. We’re still waiting on the genetic bloodwork we’ve sent out to come back before we schedule more testing.
Keegan had another celebrity moment this morning. Blake Shelton and Miranda Lambert (country singers) were at the hospital today because they’re supposed to perform at the Texas Stampede tonight at the American Airlines Center. Child Life came and asked if Keegan would like to meet them, and of course, we said yes! They were both very sweet, even if a little intimated by the amount of lines coming out of him. Keegan was the only one in the playroom with an IV pole, and he has a double pole with 3 different lines, plus he had to wear his mask. Blake Shelton had just finished saying how kids always clam up around him when Keegan put both arms out and lunged at him to be held. It was pretty funny. We took some pictures, but we’re still having trouble posting at the hospital. Gray will try to put them up tonight. Just keep checking.
Please pray that Keegan has a good enough weekend to go home next week. Gray and I were hoping to not go home until we had answers and were sure we wouldn’t be right back here again in a week. However, we don’t want to wait another week here for bloodwork if he’s ok at home with a nurse at the house. Thank you as always for your love, support, and prayers. We truly wouldn’t be able to get through this without it.