Friday, May 20, 2011

medical stuff... a long rambling update

By  necessity we see a lot of doctors... specialists connected to all of M's issues, the kid's pediatrician for everyday stuff, and lately R's needed to be seen more frequently because of the back pain she's continued to have since the car accident we had last December.

This past week we had two major appointments... R saw an orthopedist at The Children's Hospital who specializes in back pain, and M had MRI's and arthrograms of both hips.

Unfortunately, R's appointment was a total waste of time. The orthopedist was very young, and probably very smart... but his "people skills" were terrible. He was rough in his examination of R, and apparently paid no attention to the information sheet they had me fill out which, along with her medical history, let them know that she's developmentally delayed. He fired questions at her way too fast for her to process and answer... even if she had been familar with the big words he was using. After a two minute exam he gave his opinion that her back pain was nothing, and started in with a long patronizing lecture to me about how I just needed to stick with PT and R would be fine.  At that point I'd had ENOUGH. I stood up, thanked him for his time, walked to the exam room door and opened it. Luckily he took the hint and left. It was also lucky that it was a heavy door, with one of those things on it to slow it down as it shut... because otherwise it might have been slammed behind him.

R said he was so rude to her that she was trembling during the examination and that she'd rather just keep hurting than see another rude doctor.

The kid's pediatrician read the orthopedist's notes about the appointment (she is connected to the Children's Hospital computer system) and was also upset (an understatement) with his handling of the appointment... She's already left a message for the orthopedist to call her, and ordered an MRI for R (the orthopedist refused to order an MRI, saying it wasn't necessary.)

Not all the doctors we run into are great, but it's been a long time since we've stumbled upon one THAT bad.

Thankfully M's procedures yesterday went more smoothly. They were also done at Children's Hospital (our home away from home) and took a couple of hours. Because he's still having a lot of hip pain, his orthopedist (a different, much better doctor!) suggested MRI's and arthrograms of each hip the last time M saw him... with the goal of trying to pinpoint the pain and decide on what (if anything) to do. M did well with the procedures. He was pretty stressed earlier in the week, and after R's experience with the orthopedist from hell I almost cancelled the appointment... not wanting anything to do with Children's for awhile... but it all went fine. They had a "child life specialist" come to radiology to help M through the procedure... basically she's just someone who has a head's up about his disabilities, can help him understand what's going to happen, answer questions, and even just hold his hand during the procedure. I decided to wait in the waiting room this time. I've always gone with M for procedures etc. but I wasn't allowed to stay for the arthrogram (radiation exposure) and he's already had numerous MRI's so they aren't scary to him, so I decided he could just handle it himself.  And he did. :)

I'll schedule R's MRI today, and hopefully hear back from M's orthopedist soon about the tests they did yesterday. More hip surgery may be one of the options, it's something the ortho has already mentioned as perhaps being needed. M is stressed about the possibility of more surgery (and honestly, so am I!) and I've told him that unless they have a VERY good reason for surgery, and can virtually guarantee it will help significantly with his pain... we're not doing another major surgery.

Unfortunately, M doesn't have any good options with his hips. More surgery (if that IS an option), or living with daily pain waiting for the hip joints to deteriorate to the point they both need to be replaced. Neither one are great options.

On the bright side though...  I adjusted M's meds a week ago or so and he's doing well... more stable again and without the increase in oculargyration that I was worried the med adjustment would cause.

Also on the bright side... We are going to a concert tonight!! Our church is sponsoring a Matt Mauer concert this evening and we're going. :) It will be the kids first "real" concert and they are so excited... and so am I...I really like Matt Mauer's songs and it will be great to hear him in person.

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