The underlying issue

From the so-called bed I sleep on, I grabbed my laptop this morning and Googled bedsores. Although I was stiff and achy, it was not my body I was worried about. 

After a number of nights of fairly decent sleep, Deane is once again having a rough time. It seems to deny logic – he is eating better, working harder, being more active and napping less. He should be sleeping like a log.

He goes out like a light and sleeps soundly for the first couple of hours. Then somewhere between about 2 and 4 a.m., he becomes very restless, wanting to be turned every 15 minutes, unable to get comfortable for any length of time.

After the second night of this middle of the night tossing and turning, I was desperate for an explanation and help. A bedsore on his coccyx or tailbone has been an underlying issue – excuse the awful pun – through Deane’s whole hospitalization.

I have written many times about the efforts to fatten up my son. This six-week odyssey has cost him hard earned weight. Deane is now little more than skin and bones. There is not a lot of padding any where on him, especially his tailbone.

One of the causes of bedsores, I learned, is “shearing,” the rubbing of skin against bed linens. The advice is never to raise a bed more than 30 degrees to prevent sliding.However, when Deane was struggling with a collapsed lung, we often raised up his bed to prevent liquids pooling in the back of his throat. I fear his prominent tailbone did too much shearing.

By the time he arrived at the rehabilitation hospital, his tailbone was well on its way to becoming a full blown pressure sore. It has not blistered or broken open, but it is also not going away.

My sleepy Internet search this morning told me a number of things I had already learned: bedsores are difficult to treat, hard to get rid of and the best treatment is frequent repositioning.

We are trying. Because it is his tailbone – the middle of his back – we have to put him on his side with his legs (still in the wedge) perpendicularly in the air so that his hips don’t roll, putting weight on his coccyx. I think what is happening is that by the middle of the night, Deane is tried of being on his side and is trying to wriggle on to his back.

Who can blame him? Unfortunately, at this point, we are all suffering from the pain on his butt.

(Sorry. Chalk it up to lack of sleep.)