Re: CP and spinal infections

[Guest guest]

Hi ...thank you...yeah...pretty much removal of the hardware is the only

solution. Actually our son's hospice nurse just left and we did a lot of

talking and I read her what it said about how the whole spinal infection works

and all and I showed her the printed out copies of the xrays I have...our son's

ortho doc always printed a copy out for me since I kept asking in the beginning.

I was able to show her where the intitial infection was almost two year

ago...the bar going between the rods and then the current one without the bar

and she was able to see what hardware...the rods, the screws, there are in that

lower area where the sinus thing is. When I read the thing about osteomyletis

(sp) and how there may be no fever, the infection works it's way up from the

bone to the surface and has the sinsus that can continually weep or close up and

open up like his is it was like " wow...that sounds just like Tommy " . We talked

about the tylenol and

codene...I told her how our daughter reacted to it, how some friends had said

that it affected them, with one of them having a disabled son and basically

didn't really help with pain itself just zonked him out. She said she had it

one time and didn't like it because of the weird effects. So we are going to

switch to a different pain med and see how that does.

I'm really happy with the hospice nurse...she is great and the whole hospice

groups is great...felt a lot better after talking to her and realizing that

she's part of Tommy's team and we are all wanting the same thing. She said that

if down the road the pain med we are switching to isn't effective then we will

go from there...

Thanks again for your post and your research