Guest guest Posted November 7, 2004 Report Share Posted November 7, 2004 , I am so sorry about your daughter. My prayers are with you and your family. I hope they can find something that will keep your daughter from having so much pain. When I worked for Home Health we had an IV group and that's is all they did, they had to go get a special certificate to become and IVRN for out here, I can't believe that nurse kept changing the fluid in the balloon for, the only time you deal with this is when the tube is going to be changed. The most helpless feeling in the world is when your child is hurt and you can't do anything to stop the pain. Lin As if things weren't rough enough. my daughter was admitted emergently to the hospital on the night of the 23d, she was rushed to CT in the middle of the night, and to the OR at the crack of dawn. My sonn had to leave work to get us up there, and initially I wasn't going to stay with her because my pain was so bad. They about begged me to stay (my son was like 'dang they've asked you 5 or 6 times now to stay), so his girlfriend brought me stuff to be able to stay up there. With all that went on, I'm glad I stayed.....I'd have really felt rotten if she'd gong through all of that alone. Apparently, the dingbat we had for a home health nurse was removing and replacing the water in her Jtube balloon. The tube wasn't even in her intestine; the balloon was blown up in her abdominal wall. The jejunum had totally closed up, so they had to re-open it, and do a revision of the j-tube. That, unfortunately didn't stop her pain. She'd been admitted with intractable pain on her right side despite my giving her IV morphine every 15-30 mins. They're thinking the j-tube mess was found accidently, and they're discussing RSD/CRPS in the chest and abdominal wall on the right side. They did call in the pain team, and luckily it was my doc that was on service that day. He has her on a 100mcg Fentanyl (Duragesic) patch and we're titrating morphine up to 2mg every 2 hours. She was discharged this past Sat, but when I called for a f/u appt in the pain clinic, I was told she had to go onto a waiting list then when she came to the top of the list they'd meet and decide whether they could help her. Like, no way, no how---I emailed my doc, and he called me the next day.....said he'd be taking her on as a patient and following her for me. I know her neuro has mentioned CRPS several times in the past, but hearing it again from him and then the pain doc agreeing about broke my heart. I can't bear for her to go through this burning, searing pain. The only thing in her favor is that she's young and hopefully they'll have a greater chance of putting her into remission, and as the doc says she's not a 'weenie like a mother' and can tolerate meds. So that's my messed up world in a nutshell. I doze off for a little bit, and wake up waiting for the next shoe to fall. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 Yes, Winnie.. please peel the " S " for SuperWoman off of your chest.. gee whiz it's only what November 4th.. I don't think another day or two or three delay is going to be a major obstacle in anyone's path. Stop sweating the small stuff. TOPS Hugs, Loni Quote Link to comment Share on other sites More sharing options...
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