Avery has now entered "the sad days" as the doctors refer to them. That would be day +6 through +12, give or take a few. There's not a lot to say about it except that it's heartbreaking to watch your child suffer day after day.
He has mucousitis, which is sores and inflammation in his mouth all the way through his GI tract. Avery is refusing to eat, because to do so is painful. He also isn't swallowing much at all, which means that all the saliva and mucous builds up in his mouth and throat, and he's had some pretty bad choking episodes and some low oxygen levels that have required a little bit of direct oxygen. They have started him on continuous tube feeds and extra fluids to compensate for the fact that he's not eating, and today at rounds, are going to discuss putting him on a pain pump. He's been getting morphine as needed, but Avery doesn't really express pain, so it's hard to tell sometimes if he's having pain until he's in a lot of pain. A pain pump would be a little simpler and consistent.
He did have a fever night before last, which the doctors said is normal. His body and the new cells are in a battle right now. I'm just hoping and praying everyday that the cells win the battle and start to graft....quickly!
The only thing keeping me sane right now is knowing that this is all part of the process, and it WILL pass. I'm struggling a little with juggling my 3 kids; I need a clone of myself! One thing I must say is that I'm married to an AMAZING guy. I can't imagine any man being more supportive and there for his family. He's on FMLA right now, and so he's been staying every night for the last week so that I can stay home with Bryson and Em. I've been making day trips this week. Tuesday, I brought Emerson with me, and while I spent the day with Avery, Phillip and Emerson had a father-daughter day in the Ronald McDonald House. Yesterday, I took Bryson out of school and took him with me, and he and Phillip had a fun day together. The Bengals' wives did pizza for lunch, and then Bryson played in the game rooms, and I think wore his daddy out!
Thank you so much for your prayers!! We need them more than ever.
Bethany
We had special prayer for him last night at the end of service. Lean on the Lord. He will be your strength in these hard days. Love you guys!
ReplyDeleteStill praying and will continue....
ReplyDeleteGod bless,
Carrie
P.S. Prayer has been requested for Avery at church.
Psalms 94:19 "In the multitude of my thoughts within me thy comforts delight my soul"
ReplyDeleteHe is there to comfort you even when the "sad" days and thoughts seem to overtake you. It will pass and there is a silver lining to this gray cloud.