See this page for all of the posts related to our journey with craniosyntosis.
Once we got home, things got much better. Except for his swelling. The doctors and nurses had warned that the swelling should be the worst on the day that he got his bandages off. Instead, it was a couple of days later that we really noticed the swelling. But you know what? It wasn’t bad. He kind of looked like he had a bad facelift and weird cheek implants. It was gone though within a couple of days and never got so bad that his eyes swelled shut (which is a possibility).
He wasn’t napping like normal. I think he took 4-5 naps the first 2 days home. Each was about 45 – 60 minutes.
He didn’t sleep through the night (and still isn’t a week later) like he had before surgery. In the beginning, I think it was pain related as he’d wake up 2-3 times a night, about every 4-5 hours. We’d give him the pain meds and a bottle. Even then, it took a 30-45 minutes of cuddling before he went back to sleep. I debated waking him up to give him pain meds, but in the end, I thought that’d be more disruptive to him than him waking up on his own. I’m not sure if I made the right decision there.
A week later (as I write this) and he’s still waking up once at night, but I don’t think it’s because of pain anymore. He just takes a bottle, some cuddles, then he’s ready for bed again. I think his sleep patterns are still a little off.
After a couple of days, I took him off the prescription pain meds. He never broke out in hives or anything to give a clear indication that he was allergic, but he itched his nose constantly. He’d find any surface that he could and rubbed his nose against it. Since the doctors (and the pharmacist) said to transition him off of it when I thought he was ready, we did. It went well! We actually gave him Children’s Ibuprofen and it seemed to take away his pain just as well as the heavy duty stuff, without the nose rubbing and without making him so sleepy.
On day 6 home, I stopped pain meds completely. He was going longer and longer between doses and it seemed like I was giving him the medicine just because the clock said to. If he would’ve shown signs of pain, I certainly would have given him another dose. But he was fine. I might have been able to stop it sooner than day 6, but with a 1-year-old, it’s so hard to tell. It’s such a guessing game at that age.