25 Aug Got a map?
Remember how I mentioned in the last post that if the fever went any longer, we would be in uncharted territory? Well, welcome to the wild. If we felt lost before, that feeling is magnified tenfold as this fever has started to morph in front of our eyes. It truly reemphasizes the need to get Keegan somewhere new… and quickly.
Keegan’s last fever went on for four and a half days (whether or not it is truly broken remains to be seen). I had to talk our way out of being admitted last night. Everyone, us included, was worried about this new shift. But we felt like he was stable at home. With the promise that we would be in the ER the second we lost that feeling, we put him to bed. Last night, he stayed between 99.5 and 100.1 all night long. Until now, Keegan would really retch and throw up at the highest temperatures (103+). He did not process his 10ml/hr night feeds at ALL last night, and ultimately threw them up around 5am despite his temperature not being that high. He stayed in the 98s most of the day, which is still above Keegan’s normal. Fingers are crossed and prayers said for a much, much better night tonight.
We spent most of the day at the hospital drawing labs, doing dressing changes, and meeting with the transplant team about planning issues for the trip. Keegan’s PICC is still hanging in there, which is good news since the port is still leaking. We are going to continue to use it for a few more days at least to see what happens, but it doesn’t look good. Unfortunately, his labs have taken a hit from these fevers. Keegan will need to get an albumin and IV lasix to give him a boost. He may also need blood soon, but that would be a lot of volume to give him in one day. At the end of the day today, I think the doctors were on the same page with allowing us to do this outpatient in the infusion lab. We are trying our best to keep him at home until the last possible minute. We need more time to get our lives in order before leaving, and frankly, we want to spend as much time as we can together as a family too. We have not nailed down a day for travel yet. The goal is still for the end of this week, but there are a lot of logistics left to handle.
To wrap up tonight, I wanted to share some pictures. Maybe not from “better” times per se because he had just recovered from a massive surgery, days from several other big procedures, and in between fever cycles. Despite all that, he looks lightyears better than he does today, and my heart needed to see his beautiful face tonight.
I think you can tell from the next picture how it breaks my heart to see how the last few months have affected him. He is still my beautiful little boy, and I love him so much it hurts. I just pray that we can find a way to help him feel like his happy little self again soon.
