Tater has vent clinic today and I'm going to finally get to explain why I want to take him to Cincinnati. His vent team in Birmingham has been hesitant for us to take him to Cinici. I totally understand why and where they are coming from. Tater will still need to see them and they're not going to be the primary caregivers. They're used to giving orders, not taking them. I understand.
The thing is, I'm exhausted. This will be Tater's third visit to Birmingham since Thanksgiving and we have one more at the end of the month. It's an hour and a half drive down there and back. Parking is spotty and we usually have to wait long times to see the doctors. We have the drive down pat and Tater doesn't mind going but I have to find someone to pick Toser up from school, I'm always rushing to get home, Tater is soooo pleasant the day after a Birmingham visit (not). I dread visits down there.
The Children's hospital in Birmingham is associated with a teaching hospital. We see top notch doctors and I've never been disappointed with Tater's care. But with the way the specialty clinics (urology, vent/pulmonology, ENT, etc) are set up, I'm expected to be the information sharer. Yes, they all have access to his chart. Yes, all of the specialists know each other and talk with each other. But they never look at his chart and they don't talk, really, and I feel like I'm drowning in trying to get the doctors all on the same page.
After Thanksgiving, Tater had an appointment with ENT in Birmingham. I didn't make this appointment, his pulmonologist did. She wanted Tater to see this particular ENT so we went. I was assuming the pulmonologist had at least talked with the ENT to let him know what the deal is. No kidding, the ENT walked in and asked, "Why are you here?" Not in a 'hi, how are you' way, but in an 'I have no clue why you are here, seriously why are you here' way. When I explained why Tater's pulmonologist wanted Tater there, the ENT said, "Well, I'm not the guy who can help you." I appreciate the guy's honesty, but wow. It makes me want to cry just thinking about it. It was such a wasted trip and I felt so stupid, even though I was only doing what I was told to do.
I know there will be issues in Cincinnati. No place is perfect, there will be kinks and everyone knows I'm going to get fired up about SOMETHING. But in Cincinnati, we see 3 specialists (pulmonology, ENT and GI) who honestly, truly share information because they're all working together. No one will be looking to me for the results of a test because they will already know! Because they actually shared information! And look at Tater's issues as a whole and not just as broken up bits. Such a novel concept.
So, we're about to leave for Birmingham, and I'm hoping I don't cry when I'm pleading my case. I'm desperately trying not to burn bridges here, and I think his vent team is great (well, except for one doctor who has a Napoleon complex). We all KNOW I'm going to cry so just wish me luck on the not burning bridges thing. K? Thx!
Wednesday, January 5, 2011
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1 comment:
Good luck and maybe shedding a few tears will get you the understanding you need from the Birmingham doctors. :) One of Jack's doctors told me that a confident and skilled doctor is never be offended if a patient (parent) seeks a second opinion (or a third, etc). The way I see it, if bridges are burned because I am trying to do what I believe is best for my child, then this was a doctor I didn't want to care for my child anyway. That being said, I completely understand that burning bridges can make life so much more difficult.
Best of luck today .....
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