June 20, 2008 @ 7:43 am | Filed under: Special Needs Children, Uncategorized, Wonderboy
When I mentioned yesterday how many specialists my son sees at the children’s hospital, commenter Anna marveled,
Melissa, ELEVEN specialists? Next time I grouse about two specialists, I’ll shut up.
Oh no, please don’t shut up. Grouse along with me! Medical appointments expand to fill the space around them, don’t they, so that I’m guessing your two specialists suck up massive amounts of time just like our eleven.
Eleven is only the number of departments Wonderboy visits at the Children’s Hospital. Then there’s his pediatric ophthamologist at the university hospital, and the speech therapist and audiologist in the school district. Oh, and also the regular pediatrician, his primary care doctor. If you add in his dentist, and since the child managed to knock out four of his teeth in the past year, I think we may certainly add the pediatric dentist to the roster, that’s (gulp) 16 doctors and therapists my little guy sees on a regular or semi-regular basis.
Yes, it’s a little nuts.
One of the hardest parts of juggling this caseload is keeping all these folks on the same page: namely, the page that is all about the whole picture of this kid, not the tiny piece Dr. Specialist is focusing on. I often compare my role as having to hold tight to the leashes of a bunch of big dogs all pulling in opposite directions. And sometimes it seems like the doctors communicate with each other about as well as dogs do.
In Virginia, we had some personal connections with a few doctors in a way that meant I had another set of hands helping me hold on to the leashes. You may remember how I pined for our Dr. Lily when we left, wished I could bring her with me. (She actually did offer to fly out to California with me and the children when she heard I was going to drive them out here all by myself. Now that’s dedication. But I was more afraid of five hours on an airplane with Wonderboy than two weeks in the minivan, even sans other adults.)
Here in San Diego, we have excellent doctors, absolutely. But none who have taken that step past the detached professional relationship toward a more familiar, I’m-your-ally-let-me- help-you-with-those-Huskies rapport. I’ve had to come up with some strategies for making sure all the boy’s doctors take the time to at least glimpse at the whole picture of him, not just their individual pieces of the puzzle.
The biggest help has been the Doctor Roster. I typed up a list of all the people Wonderboy sees. Four columns. First column: doctor’s name and phone number. Second column: doctor’s specialty or department. Third column: date of most recent appointment. Fourth column: Notes on the last appt, tests ordered, recommendations made, etc.
I’m saying doctor, but this also includes his PT, speech therapist, etc. Everyone involved in his treatment.
I carry several of these lists with me to every appointment. It’s the first thing I hand a doctor when he or she walks into the room. Always, the eyebrows go up: the complexity of the big picture is immediately apparent from the length of the list.
I’ve begun to notice some major improvements in communication between departments since I began handing out this list, and I have definitely found that the individual specialists spend more time asking me questions about his history and his overall treatment plan.
Of course, if only the kid had one global diagnosis, that would help so much! One peg for the docs to hang their hats on; one road map to follow. But that, we know by now, isn’t likely to happen. There is no syndrome that fits, no other case in history that contains this specific bizarre amalgam of issues. Someday, some savvy doctor is going to write a paper on the kid and there’ll maybe be a new syndrome in the books. It’ll be named after the doc, but we’ll know it’s Wonderboy Syndrome, won’t we?
doctors, pediatrics, Special Needs Children, Wonderboy
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I love that idea! We’re new on this journey, only a few months. But we’ve driven hours and hours this week, we get to do it again in three weeks. Yes, it sucks two whole days out of the week. The other two kids have spent more time with their grandpa than their parents. It’s a whole new life for us, but it’s worth it for the benefit to our daughter.
Posted on June 20th, 2008 at 11:13 amAll that to say, I can sympathize but I’m glad we’re not balancing that many doctors!
Although, given your criteria, I can count four doctors. I had left out the PT (new this week) and the primary.
At one similtaneous point, we were seeing:
Posted on June 20th, 2008 at 11:58 am- three different speech therapists
- a physical therapist
- a pediatrician (as well as our family doctor)
- and I had lots of visits to an oncologist. (I’m fine)
What a grand year that was.
This one idea? Your grid with all of the specialists on it? Is something EVERY parent of a syndromic child should hear and do. It’s brilliant, elegant and do-able! “You don’t have a lot of time? Let me break it down, spell it out for you!”
(Plant a smooch on Wonderboy’s pate from me!)
Posted on June 20th, 2008 at 6:50 pmWhat a great idea on the roster. It forces the doctors to see the big picture, esp if you feel too rushed to remember them all yourself!
My hats off to you, Melissa. Just dealing with insurance companies alone is a headache. Praying for you and Wonderboy and for wisdom to all of those doctors!
Posted on June 21st, 2008 at 2:29 pmI liked the roster idea very much. Especially since so many new interventions take a history which includes all that, so it’s nice to have it ready at your fingertips.
A mother in our area carries a huge binder to her child’s appointments! Yes, her child is that complicated.
I admit I kept nurse type hourly records on Aidan when I first brought him home from the hospital. With 14 meds, oxygen requirements, feeding tube and so on, I was quite afraid something would slip if I didn’t stay right on top of it.
Posted on June 23rd, 2008 at 7:16 pmit’s beyond me why in today’s wired society there isn’t some universal healthcare database where any doctor could look at a patient as a whole.
Posted on July 10th, 2008 at 11:35 am