When I spoke with the doctor's assistant in the Salt Lake, something she said stuck in my mind. It was one of those passing comments that don't really hit you right away, but has a slow burn that builds over time. We took some time to consider all the factors, listening to the things other trusted friends and family have said, and made the decision not to go to Salt Lake.
Basically, his assistant said that Dr. D is trained in the same method as Dr. K and wouldn't really have anything else to offer. (Which we knew). And, the more I talk to the other B'ham girls, the more I realize that the things he's done to change the cast aren't impacting the results. Dr. K in b'ham has "cured" other kids with these casts, too. He's been doing this for years, and trusts our input as well. We love him, his staff, the hospital, the area. We know this system. It has served us well.
Dr. D, great as he may be, would end up costing us significantly more money in travel, though the care would be free. However, we always run the risk of hitting another vax snag like in Chicago. But, the travel would be awful. They want us there early in the AM for a clinic appointment, so we'd have to fly out and stay overnight an extra day. Then, the clinic day and another overnight. Then casting day they require you to stay and come back to the clinic the next day for any trimming. So, three nights, four very long days. That's a huge problem for us, particularly in regard to leaving the girls for that long (and bringing them is so insanely cost-prohibitive.)
We also found out that when Miss Mehta comes to Salt Lake, she's not actually casting any of the kids - she's just going to be there as a guest. So, that's out.
And - over the last month we've been appealing the decision to have Dr. K (b'ham) considered in network and JUST got that approved. So, now our cost of going to B'ham is considerably less since the casting won't be out of pocket there.
John added a very valid point - he likes the control of going to Birmingham. It's our car, our decision if we need to stop or go on (transportation-wise), we know where the restaurants are and where the hotels are that we like. We're finally learning our way around. We love the staff there. We know how the process goes. They pad the cast the way we like. No standing in line at airport security trying to comfort a cranky or sleepy post-anesthesia baby. No rushing to return a rental car, navigating the return desk, the shuttles to the airport with bags and a stroller and car seat and aforementioned cranky post-anesthesia baby in tow.
Flying with him post-anesthesia might be hard, particularly. OR changes happen all the time and casts are outgrown all the time. Even if we COULD afford a cheap southwest flight (right now they're $385 per person, round trip X 3) and three nights in a hotel and four days of meals - which, really, that's pushing it, financially - if we had to change a flight at the last minute, we'd have to upgrade to a full fare for all three of us. It would be a LOT more if we had a schedule change.
And, if we need to get to Birmingham, it's a matter of just getting in the car and driving there in one day. OR times change. We got bumped and flipped more than once in the Shriners network. Communication can be difficult, delayed, and sometimes nonexistant (we were supposed to have been called back "tomorrow" countless times - including this last week when, once again, we never heard back. That's not adequate care, in my opinion. When you have a child with ANY medical issue, you need answers as quickly as possible. If someone takes three, four, six weeks to get back to you after repeated voicemails - that's not right.)
Basically, the way DH put it - it's a lot of extra expense, stress, travel, and inconvenience - and for what? Is there any true added benefit? It IS essentially the same treatment. (Talking with the other Birmingham casting families has confirmed this for me - that he HAS done over the shoulder casts and WOULD if we really wanted it - he's doing them on a casting-friend's son right now.)
I just kind of feel like I wanted this so badly, but now - thanks, but no thanks. Dr. K doesn't think that this is the end of casting for Jack anymore - he's willing to keep on trucking, he's still getting results and correction - and it's not like Dr. D feels so confident in Jack's case that he could do anything better for us. So, I think we'll stay with the team we've come to know and care for, who hopefully feels the same way about us.
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