On Friday when I noticed that the wound popped open again I left a message on the voicemail of the surgeon who did the procedure. I wasn’t surprised that I didn’t hear back over the weekend. We watched the wound and it improved a lot in appearance over the weekend. Today I got a call to come in and let the surgeon see what is going on.
I went in and sat in the waiting room for well over an hour. Given that I was being slipped in during a fully scheduled day this didn’t bother me a bit. My children are well behaved and polite so it wasn’t a problem for anyone. We sang very quietly to YC and read books and MC wiggled a little in her chair listening to music on headphones. No trouble. When I finally got called in I sent the kids off to the cafeteria with some money for a snack.
The nurse who was examining me was chatty and social and she had a bunch of tangentially related questions to the wound. Generally speaking she just seemed to be trying to develop a bit of a relationship. Given how small this town is, I’m not surprised. She took the dressing off and asked for specifics about the timeline of how healing is going. She asked who has been changing my dressing for me as the one we used seemed small. I told her that we are doing it and we ran out of the bigger ones and haven’t made a trip to the pharmacy yet. She was pretty shocked I am not having a community nurse do all of it–she asked how we were managing. I laughed and said we both have a lot of experience with wound care so it’s not really a hardship for us. She asked what I meant by that and I gave a run down of medical procedures either Noah or I have had to care for and her eyes just about bugged out of her head. She could not believe that people would be sent home with such major injuries to just figure out care on their own. I laughed and said, “It’s really nice to be living in a civilized country now.” She startled. She said that she guesses you don’t really appreciate what you have.
The surgeon came in (I’m having a bit of a hard time with the fact that surgeons are Mr/Ms not Dr) and started off with an abject apology for blowing me off when I brought up the EDS during the surgery. I got the distinct impression he spent part of the morning doing a cram session on what the fork it is and why it matters. He and I were quoting very similar details back and forth to one another about the condition. He is absolutely adamant that I need to get in to see a rheumatologist ASAP because my notes are bare and this condition is a big deal. He apologized again that there isn’t an EDS specialist in all of Scotland. He spent our entire interaction apologizing over and over again. I don’t think I have seen a medical person quite so deeply in “Oh shit I fucked up” mode.
He was clearly very grateful that I wasn’t angry. I told him we are learning together and things will happen along that path. Not everything will go smoothly and as long as I don’t die… we’ll improve in the future. His eyes kind of bugged a bit.
He is now quite concerned about the EDS. He stressed that it cannot be cured it can only be managed. I told him I am fairly chill about it because I’ve had all these problems for my whole life and I’ve been managing and now I have a name for it.
He said that since my wound has popped open twice and the second opening happened several days ago that it can’t be closed again and now I need to just keep it covered and wait for it to heal from the inside out. It does look like it is making progress healing and he does not want to remove the current stitches anytime soon. It doesn’t look like there is any sign of an infection and antibiotics were not mentioned. The occasional twinges of pain I feel are well within the expected level for the depth of cutting he had to do.
In the US the feeling when interacting with a doctor is often “How can I get this person out of my office” because the likelihood that you will really be a specific doctor’s problem in the long run is fairly small. There aren’t many surgeons in this region and I have a complicated medical reality and I’m not that old. The likelihood that I will end up under this surgeon’s knife again are really quite high. When I mentioned the name of the GP I am developing a relationship with he said, “Oh she’s quite nice! Good I’m glad she is getting to know you.”
This is a small town.
The generally expected rate of EDS says that there should be something like 10-12 people in a city this size. That means that information about the disorder is pretty rare and I can understand why people who provide medical care react like they are getting hit with electricity when they realize they really must learn more to care adequately for those specific people. He flinched when I said my daughter has it.
But not in a way that made me feel bad? He seemed like “Ok, I need to step up to this situation” and he was recognizing that the step rise was a few inches higher than he first assumed. That’s not insulting to me at all.
Our breakfast conversation at the house was about how you have to make mistakes in order to learn. I feel like this surgeon wants to get more information so he will never make a mistake like this again. He will handle my post operative care differently next time. That’s nice.