May I vent, please?

OK. This has absolutely nothing to do with knitting, but our family's last few weeks have been rotten and I need to vent. So stop reading now if you don't want to listen. I e-mailed this story to a friend last night and decided to basically use the entire e-mail as my blog entry for today, so here goes ...

Terry, my husband, and I have three boys. Derek is 10, Philip is 13 and Evan is 15. Evan was a 26-week preemie, has Cerebral Palsy, seizures, blindness, uses a feeding tube and wheelchair. He weighs about 80 pounds, which I can handle on my own, but it’s not easy or safe for either of us.

He saw his gastro surgeon, the one who placed his g-tube when he was a baby, several weeks ago and we learned we would need to schedule surgery to move his g-tube site down. He’s had the same site since he was a baby and as he’s grown it’s migrated up his stomach. It was up underneath his rib cage. So, not an emergency, but still something that needed to be done. We decided we’d do it ASAP, so he wouldn’t miss much outside. When it’s cold, he spends most of his time inside. Not so when it’s warmer.

So, Jan. 7 he went into Nationwide Children’s Hospital in Columbus, Ohio, to have a PICC (periferal intravenous central catheter) line placed and he had his surgery Jan. 8. For some reason, he was the last kid on the surgeon’s schedule, so we waited around the hospital most of the day Monday and Tuesday. They finally took him back for this supposed one-hour procedure about 4:45 p.m. We waited and waited and waited. After about 1.5 hours, we asked what was going on. Oh, he’s just fine, getting ready to close now, just a few more minutes. Another half hour goes by. No Evan. Again, he’s fine just a few more minutes. Finally, after another 30 minutes, the surgeon comes out. He did fine, but they couldn’t find a needle. He’s sure it’s not in Evan, but they’re keeping him on the vent and sedated until all the x-rays can be read by several doctors to make sure the needle wasn’t left behind. (This is OK by us as we want them to make sure there's not a stray needle in him either!) It wasn’t, but I think that extra hour or so on the vent came back to haunt us later.

As it was, he missed his 1 p.m. Depakote and baclofen, his 5 p.m. carbatrol and his 7 p.m. depakote and baclofen (These are medications to control his seizures and help with the tightness of his muscles due to Cerebral Palsy). He didn’t get back to his hospital room until 9:15 p.m. Didn’t get most of his make-up seizure medications into him until midnight. So far, so good, right.

Well, Jan. 9 he stopped peeing. His bladder was overfull. They think the anesthesia slowed down his ability to pee and now that his bladder was full, it can’t contract to get rid of the urine. So at 2 p.m. they (nurses and doctors on the floor) started trying to insert a catheter. No go. After about five hours of trying several different kinds of catheters and having this kid scream because, of course, they don’t use anything to numb the pain or discomfort (they did but only after about the fourth or fifth time of trying and that involved pushing some lidocaine gel into his penis, which I wouldn't think would feel too good to begin with), they decide he’s in distress and needs to have a super-pubic catheter placed which goes directly through his abdomen into the bladder. SO now he has another surgery scheduled to place a catheter through the penis and find out why they couldn’t get one in the day before.

He came home from the hospital Jan. 12 with the new g-tube and a urine bag. We went back to the urologist Friday to get the catheter removed and he peed fine the rest of the day, YEAH!

But, then his g-tube started running slow and at 5 p.m. it gets totally clogged. We can’t do anything to get it unclogged. So off we go to the ER to see what they can do. We left home about 6:15 and got to the ER about 7, got back to a room about 8, saw our first doc about 9, x-rays at 10, lots of confusion about what to try. Finally decide to take him to surgery Friday night to replace the tube with a new one. Get to the OR and find out, oh no, we’re supposed to go to radiology for them to try first. Go back to radiology, they do their thing – of course with no anesthesia or anything to ease the pain of discomfort. He’s screaming the whole time. It was awful. Then we go to a room to spend the night – oh, no, they’re going to release him so he can go home. So we got home about 1:15 a.m.

Not fun. I’m too old for this and I’m tired of docs and nurses assuming that a procedure is just uncomfortable and not painful. Part of me believes they think since he's not "normal" they don't need to worry about the pain. That he won't remember it so why control it. I really hope that's not the case, but I can't believe they'd allow a typically developing 15-year-old to experience that kind of pain without doing something to ease it. I’m seriously thinking about writing a letter to the hospital to suggest extra training for docs and nurses on how to deal with patient’s discomfort. But I’m too tired now.

He was awake and in discomfort most of last night. Now I'm dead-tired, not just too-old tired. Terry took Derek and Philip to Sunday School and I handed off my Sunday School class to another teacher. Instead of napping, I'm cleaning the kitchen, cleaning the living room from the mess the kids made last night and making lunch. It never ends!

Ahh, the life of a mother. Most of the time, it's great, but there are those few times when it just sucks. Time for a nap.
Susie