Well we can officially call this infection under control. Over 48 hours on multiple cultures, and all clean. Praise God! There is talk of dropping Bactrim and narrowing the coverage on antibiotics, we'll see if that's done tomorrow. That is the one which may impact engraftment, which is one reason we'd like to drop it if we can. And with the clean cultures, they are ready to put a line back in, but it's going to be a PICC line for now. A central line like we had before will be put back in eventually, but they want him fully recovered from this transplant first. We are just excited to get a line in! As we expected, two IVs, one in his hand and one in his foot, have not been great. And holding him while they draw blood is hard, anytime. A line back in will also mean we can start up his TPN again, or IV nourishment. He's been 4 days now without anything, which I'd think would leave him pretty weak.
Mucositis-wise he's still pretty bad. Mouth full of drool/mucus that, after seeing his mouth and throat, we suspect it just might be too painful to swallow. He complained about pain again today, so we increased his pain med drip amother time. He's getting all itchy from the drip, so like last time, we added the anti itch medication too. He has a lot going on! We pray for engraftment, so he can begin to heal, and ask you to do the same. We think it may come by the end of the week, but time will tell.
I feel like these posts are so negative right now, I'd like to keep being positive and hopeful. But the first thing I want to be is honest, real. I share the smiling pictures and feel good stories frequently because we are blessed with more good days then bad. But these days have been bad, and I'd be putting on a face if I tried to make it sound otherwise. Its probably the worst I've seen him. It's awful to sit with him and not be able to do much. Awful to see him so down when he's usually so up. I miss him. And not just because I got to be home for several days...but I miss him even when I am here, because this isn't him. I haven't seen our Drew for a week. I don't know where he is, but I hope it's somewhere were he isn't feeling all this pain. I whisper to him and pray he understands: We are doing this to make you better, I promise, so you never have to go through this again. We love you so much, and so do so many. I'm so sorry this had to be your plate. I know so much good has come from your suffering already, but that doesn't seem to make it feel any better. We are here, holding your hand through it, waiting for you to come back to us again!"
~Heidi
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