Sleep, interrupted

For 6 years since my son was born, I’ve had disturbed sleep but his recent pattern of waking twice in the night was acceptable after what we’ve been through in the past. Eleven weeks ago though he had major surgery and we’ve had some awful nights.

Thomas has a brain condition (polymicrogyria and microcephaly) resulting in severe impairment in all aspects. He’s non-mobile and has limited understanding. We’ve concluded his sleep issues are due to him not being able to turn or move much himself. Usually going to him and turning him over on to his opposite side gets him off to sleep again. So we’ve come to accept a sleep pattern that people with babies complain about, and can’t wait to get through, and we know we have this for as far into the future as we can see.

Then eleven weeks ago Thomas had hip reconstruction surgery. He doesn’t stand so his hips were displacing and would eventually have dislocated. He had surgery to shape his thigh and hipbones and position them correctly, a seven-hour operation. He was then in a spica cast (a cast from his waist to his knees, with hips open) for the next three and a half weeks. He was prescribed morphine, ibuprofen and paracetamol (as well as diazepam for spasms while in hospital). Given the position he was in, and having just had surgery, we expected disturbed sleep then and we got it.

The cast was then removed seven weeks ago and Thomas’ pain increased, as his healing bones could now move. Along with it his sleep pattern deteriorated again. We experienced him waking every half an hour, sometimes for the entire night. The best we got is maybe a stretch of five hours where Thomas remained asleep but I had to have an alarm at 3 am to give him medication. Sometimes he woke up as I gave it him (via his gastrostomy tube) then that could be it for the night. The 30 min wake ups would begin. I’d barely fallen asleep each time before I was up again. In this sleep-deprived state I was nearly delirious and yet I had to make decisions on administering pain relief, including morphine, which the community nurse and some GPs are jittery about him even having!

I’m lucky in that we already get two nights respite at home a week. The carers aren’t allowed to administer Thomas’ medication though so I still had to have my 3 am alarm. My husband also gets up at 5 am for work. I’m grateful for those two nights, at least I get something, but getting through the other five could be a struggle and I didn’t know how long the sleep issues would continue. The pain and discomfort from the operation could last until three months after it. I felt though that was something more than pain. When Thomas woke he would wake with a scream. I thought about spasms, given what had been said when he’d been in hospital both times. I sought advice, asking all the professionals I could.

Three weeks ago the GP prescribed a small dose of Diazepam, which Alder Hey advised me to increase a few days later. He improved but still woke around 10 times a night. It’s improved again though and in the last week he’s woken up once a night only, one night he slept through. For the next two or three weeks he’s still on pain relief though (which can make him drowsy) and I don’t know how long he’ll be allowed diazepam. So for now, we’ll have to enjoy the sleep and see what happens.