December 29, 2010

Day 4678 (including the night of 4677)

Segev is confused again. He is breathing when he should be coughing. Saliva and phlegm going into his lungs with some mild choking perpetuated throughout the night and now into the morning. I had to jump up out of bed well over  twenty times last night and now to continue new developments his left shoulder is dislocated. I turn him over to the opposite side usually only two times during the night but his left arm was cold, which happens usually when he has been lying not exactly right for a few hours. This time, despite turning him four times, when I finally got up to take him out of bed his arm was again cold. I started rotating and massaging his left arm as he lay sputtering noisily, half communicating and half gurgling and it immediately became apparent that his shoulder is not in place.

winter sky by Noa Fischer
Fortunately my daughter had not left for school yet so she was able to assist. I wasn't able to place it completely back, which I believe is a sign, just as happened with his right hip, that the subluxation is a result of slow permanent changes in the joint capsule. Repeated pressure over relatively long periods of time from not moving. In bed he can only lie on his side, he can't breath on his back because of the development of structural abnormalities due to his quadraplegia and sleeping on his stomach is inviting death by suffocation, even more so because of his seizures.

The good news is that it doesn't seem to bother Segev very much; it is sensitive when I apply pressure but that can be said of almost any part of his body. That kind of pain, by the way, always elicits a laugh from Segev, literally I mean.  His right hip makes a detestable sound when moving his leg outward as the femoral head pops out of place. Again, his reaction is certainly not one of tremendous discomfort and despite frequent physical treatment throughout the day, adjustments to position and changing locales (couch, wheelchair, lap) the persistent immobility does not  allow for the kind of dynamic correction that a cast or brace uses. The 'inconvenience' of trying to treat Segev, which requires a great deal of dexterity and bio-ergonomic know how as well as strength nearly completely precludes using orthopedic devices on him.

The only thing I feel I can do is to continue trying to keep his weight down which is so funny since he was dreadfully underweight for all his life except for the last year on the ketogenic diet and I was thrilled that finally he was filling out. 

1 comment:

  1. I'm sorry to hear this -- your equanimity (at least in the writing) is amazing.