Sleepless

The day after Thanksgiving River came down with a stomach bug. Anything we put into his tube just came right back out, including pedialyte. Just when I was getting concerned with his hydration status, he started tolerating small amounts of fluid. Julia and I spent the weekend soothing, rocking and on constant vigil. Monday he seemed to be feeling better, but he was still waking up frequently at night in pain. He was so clearly tired, but something was keeping him from sleeping restfully. So Julia and I resorted to taking turns sleeping in bed with him (otherwise we'd be at his crib every 10 minutes at times) while the other slept in the guest bedroom. Still it wasn't ideal. None of us were getting any good sleep. Thursday of this week we had an appointment in Boston with his epileptologist. I was at the end of my rope and was desperately hoping that this doctor (also a sleep specialist) would have a magic cure. He made some suggestions for his medications which didn't seem hopeful at the time - I couldn't imagine one more night like the last four, but a sushi lunch calmed my nerves and brought reason to my sleepless brain. So here are the changes we'll be implementing over the next few weeks:

1) Increase his melatonin from 1mg to 3mg.
2) Restart iron at a small enough dose to help with his nighttime twitching without constipating him.
3) Increase his banzel for his seizures. The doc wants to exhaust the possibility that this medication won't work before moving onto something else. This means more nausea and vomiting temporarily.
4) Continue with reglan because of the vomiting from #3.
5) Restart his periactin for gastric emptying. We had stopped this temporarily because we learned that his body can become resistant to it's effects and needs to cycle on and off of it every few weeks. Since he's been off for a week, we were able to restart yesterday.
6) Meet with his GI to reevaluate his reflux and find out if his fundoplication is still working.
7) Initiate a consult to evaluate him for the ketogenic diet (for seizures) in case the banzel doesn't work.

I always respond well to a plan and it feels like we have one, not only for his seizures, but also his sleepless nights and possible relationship to his digestive discomforts. The other perk is that he slept through last night, not waking up until 5am. I am ecstatic.

The other news is that we had River's bi-annual goal meeting this week. None of his goals changed significantly since his progress has been so inconsistent, however we did discuss his transition from early intervention to the school system which will happen when he's three. There a few options that we hadn't known of and will look into for the coming year. He'll need a lot of support in a preschool environment so we are working hard at having those in place ahead of time.