A – very – little shut eye

Sleep is an invaluable commodity. Every parent knows the value of a good night’s sleep and the cost of a miserably disrupted night.

For most parents, the majority of sleepless nights are during their children’s early years. Kids generally grow into a routine of sleeping that allows parents to get at least enough sleep to function.

However for parents of disabled children, different patterns develop. Seizures, reflux, vomiting, constant pain or assistance repositioning all require parents to be up in the middle of the night, often repeatedly. One question I am often asked by my doctors is how often I sleep through the night. When I reply “Rarely,” they shake their heads and scribble notes.

There was a time – pre-operation – when Deane only needed small adjustments to switch sides. There were nights that he slept through. Since the operation and the introduction of the leg immobilizers and the abduction wedge, it is the rare exception for my husband and I get an uninterrupted night. But with 15 years of experience, we are pretty good at crashing back into bed and returning to sleep.

Our most recent experience is something else. It is horribly reminiscent of the nights in the hospital. When it started, more than a week ago, we weren’t sure what it was. Deane was waking up 10, 12 times a night. He would want to roll over, then a few minutes later wanted to roll back. He started to shout when we would lay him on his back. He would arch and extend as we tried to roll him. We were worried it might be his hip, but once he was lying on his side he was fine.

The culprit, we think, is a bad rash around his coccyx. Since putting in his NG tube, Deane has been taking in 1600ml of extra liquid a day and, for someone who is incontinent,  that means a lot of very wet diapers. The result seems to be an exquisitely sore rash about the size of my palm.

So now we are trying to cure the rash by keeping him as dry as possible including two to three diaper changes in the middle of the night and trying to keep him off the rash. At first that isn’t too hard, but as the night progresses he wants to put his shoulders flat on the bed. The struggle to keep his hips turned means lots of lifting of dead-weight while rearranging pillows and bolsters all accompanied by loud, angry and insistent complaints from Deane.

I think we are making some progress, but my ability to function coherently is declining rapidly. As I write this, I hear Deane stirring; the first of a long string of insistent requests for my presence that will stretch through the night. This is one time, I could handle being in less demand.




One thought on “A – very – little shut eye

  1. Hi Ijeoma — that is soooo hard. Is there any special dressing or protective bandaging you could put over the rash?

    It sounds like it is definitely the rash.

    When Ben was in his body cast he had some bed sores hidden under the cast that were very painful.

    Thinking of you!

    Posted by Louise at BLOOM | August 6, 2013, 9:00 am

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