Things are pretty much the same as they were yesterday. Kevin has been in a bit of pain today, with vomiting and many naps.
A few of you have asked why the pain hasn't been managed all along and it's really just because it hasn't been necessary. We go for long periods of time with very little or even no pain whatsoever. I had trouble in the beginning with the nurses thinking Kevin had to be in pain due to his burns and multiple other injuries and they were medicating him constantly. I had to nip it in the bud because it was causing him to sleep all day when it really wasn't necessary.
Today though, because it's been going on more and more, we did have a pain management doctor come in and we discussed treating it long term. We set up a plan and we shall see how it goes. I am just loathe to do this for a couple of reasons. Number one, Kevin builds up an immunity to the meds kinda quickly. I hate to over-use something that could be necessary later and when it's really needed - it will no longer do its job. Number two, as I mentioned before, we really don't want to take home any addictions. If I honestly thought Kev was in pain daily - I wouldn't blink an eye about keeping him doped up. But we really don't have pain all that often and I worry this might end up being more of a problem than a solution.
Gosh, I just don't know what's the right thing to do here. A constant drug regimen or use it as needed. I wish the answer would just drop from the sky...
As to Megan asking about the CSF sac draining being a good thing? Yes, it actually is a good thing, but I think it's happening too fast. It stands to reason that extreme changes in size over the course of 8 hours or so would be hell for any reason. I have noticed a pattern of pain when there are speedy changes as opposed to having it happen gradually over weeks at a time. From what I am gathering, the docs are thinking that the sudden release of that tension is causing nerve endings that were accustomed to that pressure to throb in their new 'free' environment. Make sense? And for the record, I'm not sure any of this is correct. These comments are based on a newly educated guess after watching this happen for months now. And I am also learning that the docs just don't really know all that much about the brain. I guess it's just one of those organs that there is no way of knowing much because it differs in every one of us.
So hopefully we will feel better tomorrow. We have an outing planned to go to the mall and do some shopping, but if Kev is feeling like this - I don't plan to take him. Keep your fingers crossed...not so much to take him shopping, but that the pain subsides. I'm not sure either one of us can do this another day...
First 2 from the Nov kit!
6 months ago