I wish I could say my lack of posting has been due to us having had a super fun, exciting week. In reality, last week was kind of one I’d like to leave behind.
Last weekend, we noticed that Reed’s incision had drainage coming out of it. It wasn’t a large amount, but enough to be worrisome. He also started sleeping TERRIBLY. We had one night where he was up over two hours past his bedtime, and when he finally went to bed, he woke up every two hours. Tuesday morning I called the nurse line at ACH and left a message telling them what was going on. They called me back and asked some questions, and since he wasn’t running fever, and I didn’t know if it was red or swollen, she said just to watch it and call back if it got worse.
Well, that evening I got him home, and he was so cranky, and so just not himself. I gave him a bath and when I got him out, I saw that there was more drainage, it was red looking, and it was a little puffy, though I wouldn’t say swollen. I went ahead and called the on call ENT doctor at ACH. He listened to me describe the issues. When he had his surgery, the infection he had wasn’t compatible with the antibiotic he was on. Because at his follow up, he didn’t show any signs of the infections still remaining, we never did start him on another antibiotic. I wondered if the infection had just come back.
The on call doctor told me that a lot of time when the drainage starts like that, it means they didn’t get all of the cyst. He said that they are just incredibly tricky, and can get wrapped around the hyoid bone, and sometimes they just can’t get it all. He told me that we needed to go ahead and come down to have him checked out.
I called the office Wednesday morning and heard from a nurse around 11:00. She took all the information and said she needed to talk to a doctor. I hadn’t heard from them at 3:45 so I went ahead and called our pediatrician and asked them about starting an antibiotic. Well, after I called, ACH called back and told us to bring him down on Friday. THEN, our pediatrician called us back and the nurse took all the info, and when she called back she said he didn’t want to start meds, and normally didn’t for a sinus infection until a list of things happened. She said something about drainage and managing it and I told her I was more concerned about the drainage from his incision. She had misunderstood me. So she talked to the doctor again and then called us back and said they’d call in an antibiotic compatible with the bacteria he’d had at surgery, and told us to come in on Thursday. I was thankful to start meds b/c Wednesday evening Reed was just inconsolable. He didn’t feel well and he was just miserable. This was pretty heartbreaking because for a couple of weeks he had felt SO good and we really thought we’d turned a corner.
He looked Reed over on Thursday, mostly to make sure the issue wasn’t severe enough to send us to the ER at ACH on Thursday. He said many things could have caused the drainage and he didn’t know what it was and that they could help us better at ACH. He also said in his years of practice (30+), in all the cases he has sent to LR to have operations, none had ever come back with complications before Reed. Go figure right?! I would say that with all the complications he’s had with this thing, I truly wouldn’t be surprised if he ends up having to have another surgery.
Because of this, Zach went ahead and took him on Friday and I stayed back. They didn’t have him in the system as having an appointment, but they got it all worked out and got him called back. They came in and looked at him and said they needed to drain it again and get some cultures. When Zach texted me this, I pretty much fell apart. When he’d had it drained the first time, it was absolutely awful. It was awful for Reed and awful for us and I felt so terrible that I wasn’t there for Reed and to help Zach. We truly didn’t think they’d do anything like that or I would've been there in a heartbeat! He called me when it was over and said Reed had done well and that it wasn’t as bad as the first time, thankfully. They said it’s too early to know if the cyst is completely gone. His doctor believes it’s one of two things: recurrence of the infection or a suture infection, where the suture didn’t dissolve and his body is rejecting it. One side of the incision had closed nicely but the other side hadn’t so the doctor felt a suture infection was very possible. The antibiotic our pediatrician prescribed is the right one for what the infection at time of surgery was, so we are going to finish that out. If the cultures come back this week telling us something different, we’ll change at that point. We now have to return on November 1 for another check up.
Reed is feeling mostly better, but he’s not all the way 100% yet. I’m hopeful this week sees him feeling much better. I was SO thankful to see this big smile Friday evening after the rough day he’d had!
So, while it’s not terribly serious, we are definitely not out of the woods yet, which is discouraging. (Let me also say I know things could be SO SO SO much worse, and while it’s hard, I’m thankful this battle is one that I KNOW he will be 100% healed, just not when.) This poor kid has a couple weeks where he feels better, and then he quickly turns a corner. I’m praying that soon this will all be a distant memory!