Monday, July 13, 2009

In Which Logic Has Nothing To Do With It

Busy, busy day today.

Early this morning Connor and I drove up to Renton for Connor's Family Conversations summer play group. They let all of the "graduated" kids from their Deaf and HoH play group come back during the summer, and they hold the sessions in various parks and playgrounds all over Pierce and King county here in Washington state. It was rather cold and blustery today, but we still enjoyed seeing Connor's old therapists and meeting some of the cute new little guys and gals in their birth-to-three program.

We left a little early and stuffed some food in our faces before rushing off to physical therapy, where we learned that Connor has officially outgrown his back brace, and since he's still a little curvy, we probably need to be seen by an orthopedic doctor. We'll add that to our list of specialists, and go get the referral when we're seen by Connor's new Primary Care Manager (PCM) later this month.

About that, by the way-- you'll recall I was not very pleased with the state of things on that front when I left for Dallas. I finally received word this week about Connor's new PCM... and he's a resident. And not even a resident that's been there a while: a fresh-out-of-school-this-is-my-first-time-practicing resident. I'm so thrilled. Because, obviously when you've got a kid with three four-inch thick medical files and mulitple life-threatening conditions who's hospitalized anywhere from ten to fifteen times a year and is seen by ten (or fourteen, or whatever it's up to now) specialists, the person you want in charge of keeping track of all of it is someone with the least amount of experience possible. No doubt this will make things run really, really smoothly. Riight.

I'm not upset about this or anything, can you tell?

We have an appointment scheduled with our shiny new doc on July 22nd, and during this appointment, I will have to:

1) Introduce myself and briefly outline my son's 12-inch thick medical history and 25 or so current conditions, practically all of which are ridiculously rare.
2) Renew all of our EFMP (Exceptional Family Member Program) paperwork, which is due at the end of July if we want to keep our respite care, priority housing, compassionate assignment, etc. The insurance company suggested during our discussion about appointment length that we should have done this back in June but as I reminded them there was that small problem of NOT HAVING A PCM TO FILL OUT THE PAPERWORK. Rar.
3) Fill out all of the paperwork that Connor needs for his health plan so that he can start school.
4) Get a referral for the orthopedic doctor and let the PCM know about all of our current pieces of medical equipment on order (I believe there are eight) in case the insurance company calls him wanting to know if they're necessary.

They originally wouldn't let us have an appointment until August, despite the paperwork due at the end of July. I had to have someone from the EFMP office actually go down and bully them into giving us an appointment before the end of the month. Here's the real kicker-- despite my and the helpful EFMP person's exasperated insistence that we needed a longer appointment, they still only scheduled us for thirty minutes.

I'm brushing up on my Valley Girl accent, as I figure that only by talking at approximately the speed of sound will I be able to cover all of this information with the doctor during the time allotted.

I love my insurance company. I especially love the fact that at this point they've shelled out somewhere around 1,300,000 dollars in medical expenses for my child, (and continue to pay around two thousand a week in therapy, medical supplies, and medication alone) and we've had no co-pays. You can't really beat that. Every once in a while, though, I really wish I could give the whole system a good kick in the pants.

Sigh.


~Jess

7 comments:

Julia O'C said...

I understand your frustration, but give your shiny new doctor a chance. I've found that some of the best, most thorough care that Emmett has received has been from residents. I've found that they treat my son as a Real_Live_Human more so than some of the older doctors, and tend to be better listeners. Hopefully, Connor's new doctor will be excited about the opportunity to gain hands-on experience with such a great little guy and his rare issues.

Hopefully, hopefully.

Connor's Mom said...

You do make a great point, Julia O'C. Our last doctor was actually a resident too, and he was great. The big problem, though, (other than the fact that they don't know the hospital system at all) is that while the overseeing doctors will stay in the area generally between five to ten years (or longer), the residents are gone after three. It just so happens that the schedule they're on (they always finish and go to other programs at the end of May and the new ones get here in July) seems to correspond exactly with when Connor needs his EFMP paperwork renewed (in July every three years) which means I can look forward to doing this again with a completely new doctor when Connor is six, nine, twelve...

Military hospitals. You've gotta love 'em.

Connor's Mom said...

Or, maybe I'm just being whiny. I get that way sometimes. :)

~Jess

Julia said...

Maybe you can take advantage of the greenness and pressure him into extending the appointment until all the business *for which you made the appointment* has been addressed. Well, good luck with that.

wherever HE leads we'll go said...

So frustrating! It is wonderful that your insurance has covered so much for Connor, but stuff like this can really make a person edgy! Hope the new doc is wonderful and thorough.

We recently had an appt with our daughter's neurologist - her regular doc left the practice (he has seen her since she was in the NICU and we were sad he left). We were stuck with a nurse practitioner who had to check with a doc about everything anyway - so what was the point of meeting with her? Plus we had the opposite problem that you are having - we were there for 2 hours when we expected to be there 30 minutes. So by the time we left, we had a tired, hungry and cranky little girl.

Dianna Montoya said...

Hey, I didn't know you had a blog either! You've now been added to my Google Reader list so I'll be keeping up with y'alls adventures. Let me know if you're ever in Houston - I'd love to meet Connor.

leah said...

"Green" doctors sometimes are OK- our ENT (while not "green," she hadn't been exposed to all the weird Nolan things that our pediatrician has seen) really stepped up to the plate when she saw some of the things we've been dealing with. The head lag, the whole not-eating thing, the failure to thrive, the random fevers that make no sense. Our pediatrician just waved them off because she was so familiar with them, but the fresh set of eyes was really valuable.

So I'm sending lots of electronic "please be a good doctor" vibes to the new guy!

 
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