Lessons in a new town

marmalady · 08-05-2003, 05:37 PM

Ok - So we've moved, to the sunny South; new town, finding new docs, etc. Thought I'd share some of what we've had the joy of discovering this past month.

Baclofen pump refill had to be done 2 weeks after we got here; supposedly 'the' doc to do it miscalibrated the concentration, Matt got a way too diluted dose, and ended up having major league spasms about a day and a half after the change. To the doc's credit, she recognized her mistake, came out to the house with the machine to calibrate the pump, did the recalibration and gave Matt some oral Baclofen to tide him over. He took two doses and hated the way it made him feel. The spasms were so bad that he actually got dysreflexic from them; it was at night, when he was getting ready for bed; every time he was moved or repositioned, he'd spass, and then get AD. We'd have to just leave him alone for a while, then he'd calm down and we'd try again with the same results.
Lesson learned? Never trust the doc, even when what you're seeing is different than what they're doing (I had copies of all his old pump refill strips, questioned her about it, and even suggested she call the nurses who did the changes in Jersey).

Lesson #2 - Just because a doc is supposedly the 'authority' on somethine (in this case, a urologist who sees all the neurogenic bladders), doesn't mean he's worth a hill of beans. Matt promptly named him 'Dr. Dick'

! Matt was on a very specific bladder regimen in Jersey, due to lots of complications, including weekly cath changer, cystos every three months, and Renacidin irrigation to prevent bladder stone formation. Weeeeelllll, this jerk pooh-poohed everything (no matter that Matt's urologist in Jersey was one of the top SCI urologists in the country!

), and didn't schedule another cath change til end of August. We rolled our eyes, decided we'd do them at home til we called around to find a doc we could work with; which we did, and had an appointment for the end of this week. Everything seemed to be okay, we were into the third week, when all of a sudden Matt got horribly dysreflexic (in the middle of the night, of course!), his cath was clogged; we did 2 changes and ended up in the ER because his bp just wouldn't come down. Doc in the Er was cool, his BP started coming down eventually - we had the nitro ready, but by the time we got to the ER it was coming down a bit, so the doc wanted to wait. Called the new doc, who saw us yesterday, and he's way cool, willing to work with us and not afraid to ask questions.
Lesson learned - Trust NO ONE!

I know all this - I preach to the newbies the same thing. I guess we had such good care in Jersey that I'd gotten out of my 'Mother Tiger' role, but am right back into it now!

We're all exhausted, but there is light at the tunnel now, thank goodness. Just another little lesson in never, never letting your guard down.

_____________
Tough times don't last - tough people do.

SCI-Nurse · 08-06-2003, 11:17 AM

Wow, sorry to hear Matt has had to go through all of this. But thank God you are all so well informed. PLG

lilsister · 08-07-2003, 10:29 AM

jackie, whew, sounds like you have had a week! i hope it all gets worked out to your satisfaction and matt feels better. there is nothing so frustrating for me than being dismissed by medical people- unless it's the insurance people! you are a great mom, it will get better. thinking of you....debra

08-05-2003, 05:37 PM	#1
marmalady Senior Member Join Date: Aug 2001 Posts: 3,988	Lessons in a new town Ok - So we've moved, to the sunny South; new town, finding new docs, etc. Thought I'd share some of what we've had the joy of discovering this past month. Baclofen pump refill had to be done 2 weeks after we got here; supposedly 'the' doc to do it miscalibrated the concentration, Matt got a way too diluted dose, and ended up having major league spasms about a day and a half after the change. To the doc's credit, she recognized her mistake, came out to the house with the machine to calibrate the pump, did the recalibration and gave Matt some oral Baclofen to tide him over. He took two doses and hated the way it made him feel. The spasms were so bad that he actually got dysreflexic from them; it was at night, when he was getting ready for bed; every time he was moved or repositioned, he'd spass, and then get AD. We'd have to just leave him alone for a while, then he'd calm down and we'd try again with the same results. Lesson learned? Never trust the doc, even when what you're seeing is different than what they're doing (I had copies of all his old pump refill strips, questioned her about it, and even suggested she call the nurses who did the changes in Jersey). Lesson #2 - Just because a doc is supposedly the 'authority' on somethine (in this case, a urologist who sees all the neurogenic bladders), doesn't mean he's worth a hill of beans. Matt promptly named him 'Dr. Dick' ! Matt was on a very specific bladder regimen in Jersey, due to lots of complications, including weekly cath changer, cystos every three months, and Renacidin irrigation to prevent bladder stone formation. Weeeeelllll, this jerk pooh-poohed everything (no matter that Matt's urologist in Jersey was one of the top SCI urologists in the country! ), and didn't schedule another cath change til end of August. We rolled our eyes, decided we'd do them at home til we called around to find a doc we could work with; which we did, and had an appointment for the end of this week. Everything seemed to be okay, we were into the third week, when all of a sudden Matt got horribly dysreflexic (in the middle of the night, of course!), his cath was clogged; we did 2 changes and ended up in the ER because his bp just wouldn't come down. Doc in the Er was cool, his BP started coming down eventually - we had the nitro ready, but by the time we got to the ER it was coming down a bit, so the doc wanted to wait. Called the new doc, who saw us yesterday, and he's way cool, willing to work with us and not afraid to ask questions. Lesson learned - Trust NO ONE! I know all this - I preach to the newbies the same thing. I guess we had such good care in Jersey that I'd gotten out of my 'Mother Tiger' role, but am right back into it now! We're all exhausted, but there is light at the tunnel now, thank goodness. Just another little lesson in never, never letting your guard down. _____________ Tough times don't last - tough people do.

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08-06-2003, 11:17 AM	#2
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,354	Wow, sorry to hear Matt has had to go through all of this. But thank God you are all so well informed. PLG

08-07-2003, 10:29 AM	#3
lilsister Senior Member Join Date: Jan 2003 Location: Madison,Wisconsin, USA Posts: 1,481	jackie, whew, sounds like you have had a week! i hope it all gets worked out to your satisfaction and matt feels better. there is nothing so frustrating for me than being dismissed by medical people- unless it's the insurance people! you are a great mom, it will get better. thinking of you....debra