Tuesday, January 22, 2008

In case you are wondering ...

Yes, there are a few doctors in this City who I like and whose care I am comfortable with:

*Neurologist (he trained under Jack's STL neurologist at Washington University and she referred us to him)

*Orthopaedist (the reason we had Jack's spinal fusion surgery in STL was not because I didn't trust our Phoenix ortho, but because I'm comfortable with St. Louis Children's Hospital and I'm not comfortable with any of the "Children's" hospitals in Phx)

*Pulmonologist (in my book, there is no one who is as good as Jack's former STL pulmonologist, but our Phx pulmonologist "gets it" and he is wonderful with Jack)


*Endocrinologist -- didn't have one in STL, so no one to compare him to

Not comfortable with:

*ENT (Jack doesn't have a complicated airway, but he has had airway complications related to his anatomy (right aortic arch) and the ENT here doesn't express the same concern or interest that our ENT in STL does)

*Ophthalmologist (see previous post for the story there)

*Children's hospitals (The limited experience I've had with the Children's hospitals here in Phx has not been positive. There is no comparison to St. Louis Children's - which is ranked as one of the top 10 Children's Hospitals in the country)

*Biggest issue is no coordination of care. I have to run all over the valley to see different doctors who have privileges at different hospitals, who don't talk to each other about Jack, and who won't coordinate procedures. At SLCH, I get everthing done in one building, with doctors who share information about Jack and who always work together to perform their respective procedures or surgeries on the same day so Jack is under anesthesia only once.

I haven't heard back from Jack's STL ophthalmologist yet, but today I scheduled appointments with all of Jack's STL docs for October. I'm sick to my stomach just thinking about making the trip from Phx to STL. It's not a given we are going back, but I want to give myself the option. We couldn't get in with Jack's neurologist -- she's already booked through November, but I emailed her and she usually gives her scheduler permission to fit us in.

Yes, my expectations are high when it comes to doctors and what I need from them, but it's only because I've experienced some of the best in STL. I just can't force myself to settle for less than I'm comfortable with. Sure, it would be so much easier to not have to travel 3000 miles round trip to see doctors, but I've never taken the "easy" road, so why start now. Fortunately, I have a husband who accommodates my craziness and who is always willing to make the drive to St. Louis. It's not something I could do on my own.

Keep in mind that Jack is a very medically involved kid. In all fairness, I'm sure the doctors/hospitals in Phoenix are fine for the average kid who only needs a specialist and/or hospital on rare occasion.

That's my story and I'm stickin' to it!


Melisande said...

Well, we'll hope NOT to see you in October...(hugs, Ann)

SLCH Rocks! :)
(I'm sure Donovan and Jack would disagree!)

Anonymous said...

You always do what is best for Jack. I'm just glad you have a hospital that you trust so much. Believe me, I understand--that's why we travel for Nathan! Have a great day.

Anonymous said...

Having good, considerate, professional care for your son is not too much to ask for. He deserves it.

Karen said...

WhooHoo road trip to STL. Let us know when you are coming for sure! We'd love to give Jack some lovin!

Sarah said...

It's hard not to compare medical care when you've had a taste of how "good" it can be. We were in shell shock going back to Children's in San Diego after being in Cinci. Nobody coordinated care like them. Since switching to Orange County, we are much happier. It is truly amazing how good medical care can make you feel slightly comforted. Good luck if you make the trip!

julie w said...

You are right to want the best for Jack. We have good doctors at our local hospital, but they are not experts in the care of a child as complex as Sam and they usually refer to the children's if in any doubt.
Nothing but the best will do for our boys, eh!