Friday, April 24, 2009

We have a new date.

Okay, so we're going to try this again. Our next scheduled attempt at the Fontan is Monday, June 8th.

Hopefully that will give her plenty of time for her lungs to recover and be strong for the surgery. She is supposed to see her pulmonologist (DC docs want her to be seen within one week of her discharge, on Tuesday). I called on Wednesday and was told that the next available date was in JULY!!! Can you believe that? I can't begin to tell you how angry that makes me. 

The kids that see a pediatric pulmonologist have issues with their.... lungs. Just their lungs. Eh, no big deal. Seriously? They can't organize their practice to see sick kids???? Granted, there are very few pediatric pulm docs in the area. It's really quite sad. Of course you wouldn't know that until your kid needed to see one. And most people don't need that kind of service. But, what gets me is that clearly there is a need. If you're schedule is booked until July, and you're not leaving any room for sick kids, follow-ups after hospital discharges, etc., then we need more docs.

Just starts me on my rampage of how inadequate the health care is here in Richmond. Most locals think we have a children's hospital here. But we don't. What is called "Children's Hospital" is a long-term care facility and therapy service. Your kid wouldn't be rushed there after an accident.  

And need I explain how good it would be for our economy to have a full-service children's hospital?  All those jobs, all those people needing a home to live in, places to shop.  

Anyway, I took Harlie to see her pediatrician yesterday and I talked to him about my inability to get her in to see her pulm.  He said he would make a phone call for me.  It's just so frustrating.  Harlie's gotten pneumonia twice in a matter of weeks, and she has to have major open heart surgery - which greatly involves her lungs - and she has less than the average person (3 lobes compared to 5).  If she were to get pneumonia while recovering from the Fontan, it could be life-threatening.  And her pulm can't work her in?  Are you kidding me???  

I just need to know before going in that were not dealing with a bigger issue involving her lungs.  And I can't take any advice from her cardiologists about her lungs.  Just as I can't take any heart advice from her pulmonologist.  So, I really need her pulm's blessing before her surgery.  

Hopefully, her pediatrician can get her in.  I suppose I could take her elsewhere - like DC - I'm sure they could work her in.  But, they don't know her history.  I mean, I could tell them and bring them up to speed, of course.  But her pulm here knows her.  He saw her during her 8 week recovery at MCV after the Glenn and he's seen her ever since.  And he knows me.  And sometimes I think that's just as important.  

That's it for today's vent.  Be sure to tune in tomorrow!


Ann said...

Christy - sounds like you are dealing with front office people who don't have a clue. This is where having the doctor's email or a direct line to him/her really helps. I would request (demand) that the pulmonologist call you so that you can discuss the issue directly with him. I've got to believe HE would get Harlie on the schedule asap. Hopefully, your pediatrician will get it done (and if he can't, there is really something wrong with the "system").

Good luck and wishing Harlie a very healthy next few months.


Kim said...

Silly idea, but maybe this would work.

The pulmonologist knows you. So ask for HIS (or her) voice mail. Don't take no for an answer. Leave a message there explaining what you need and why. If the staff give you issues, say it's confidential patient-doctor info. Skip the scheduling and go straight to the source. He couldn't have the heart to tell you no.

Good luck. I know you'll get in. It's the idiots at the front end that cause the problems. And the administrators. Ugh.

I so agree on the children's hospital. Maybe that's a plan we can work on some day, when we're grey, retired and rich. haha!

Susan said...

I was just going to say exactly what Ann said. It sounds like you have a good relationship with your pulmonologist and given Harlie's situation I bet he would make a spot for her no matter what. Does he have a nurse that works for him that you could send the message through? That's how it works here when you need something from the doc. You call the nurse, she tracks down the doc and they make it happen. Good luck! I can only imagine how frustrated you must be at this point.

Tracy said...

So sorry to hear you are dealing with such crud from the doctors. I know your frustration all to well. Have you ever thought of traveling to Cincy. They have one of the world's top Pulmonologists there. Besides it being a Haven for VACTERL families everywhere. We traveled there in Feburary and it truely is one of the best hospitals we've ever been to. MUCH, MUCH, MUCH better then then Children's in NW PA.
Thought I'd suggest that anyways.

But your right there is definitely something wrong with the 'system' and even more so when it comes to caring for children with VACTERL, as if they are the same as any other child.. please.

I have days where I wish I could conjure up VACTERL Island where all of the families could get together for support and lived close by and that we had the best of the best doctors(on my imaginary island) and that we could get our children in without any issues whatsoever. So, what do ya think?

Michele Andolina said...

I completely understand your frustration. Hopefully they'll realize they're delaing with the force of nature that is YOU!! Go get 'em! And I'm so onboard with the need for a full service children's hospital here. It broke my heart when VCU decided they didn't have they funding to go ahead with it. Is there any kind of advocacy group around that can push for that? I'll join up! Take care.