Boy, I'm real tired of this shunt thing. Unfortunately, Kevin's head is getting bigger so the neurosurgeon will be called for tomorrow morning. I am hoping it's just another gauge issue, but who knows. Luckily it's not affecting him too terribly today. He has been carrying on like normal and he did eat 4 pieces of pizza for dinner so no problems with the appetite.
About the only thing abnormal is the fact that he took a couple of naps today and he didn't want to go to my house for dinner. We did do a CT Scan this afternoon, so he missed nearly all of his therapies, but he did still have speech and that's our favorite, lol.
I really wish that the docs in Texas had placed the shunt in a different area. Where they placed it seems to be causing problems. I guess the gauge can get turned really easily and Kev has been laying on his right side sometimes to change his position and they think that is what caused it to get turned smaller the last time. As an FYI - it is placed down low behind his right ear.
And while I was in the middle of writing this post, Kevin actually got sick and vomited. It was within minutes of him getting his meds, so I am not sure if it was the meds or one of the symptoms from ICP (intracranial pressure - or in other words - the pressure of the CSF buildup against the brain)
I just wish this could all be done with and we could just go home. I really just want everything to go back to the way it was on May 30. I don't want my son to have to go through all of this crap. I don't want my daughter to have to give up her whole life to be here with us. I don't want to have to keep every friggin bit of nursing information and at least 12 different specialists information in my head. I don't want to remember every symptom of every problem we have. Frankly, I don't even want to remember what ICP is. And I don't want to know about burns and skin grafts and bone fragments and hemi-paralysis and H.O. and loss of brain tissue and I could go flippin on and on...
Damn! I hate this stuff and I am apparently having a little pity party tonight. I think I will just sign off now before I depress all of you. Sorry for my little outburst, but I really just want all of this to be over...and I think it's hitting home that it never will be.
First 2 from the Nov kit!
4 years ago