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Wednesday, December 19, 2012

2 week post-op follow-up

My facebook status yesterday afternoon said:
"If you ever walk into a doctor's office waiting room and see kids swinging from the chandelier (figuratively, of course), don't judge their mother. She's probably been sitting there for over an hour and has used up everything in her bag of tricks already so she's resorted to letting them rearrange the furniture and rip all the little cards out of the magazines. Just sayin."
And that pretty much sums up how fun our surgery follow-up was. I had both of the little girls with me and they did GREAT for the first hour that we were in the waiting room. Especially considering that we were there at 1:30 in the afternoon when Raya normally would have been taking a nap (if it had been a nap-taking kind of day) or at least would have been playing at home. I was SO proud of the girls for behaving as well as they did because I know they were bored out of their minds after the first 20 minutes. I think that was about the point when they started moving the kid-sized chairs all over one end of the waiting room. I was chatting with another mom whose ADORABLE little girl had just had her G tube site revised because of massive granulation tissue. We had a good solid 45 minutes to discuss G tubes before her daughter got called back. I have come to expect that from the surgeon's office. It's ALWAYS a long wait. I block out half of the day when we have to go there.
We checked in at 1:20 for a 1:30 appointment, and it was about 2:35 when we got called back. By then, Raya was D.O.N.E. She was almost to her meltdown/beyond being able to communicate stage when we went back to weigh her in and in my frustration with trying to get her backpack off and get her on the scale (fully clothed with shoes and a wet diaper...) I offered a very empty apology to the MA. Something to the effect of, "I'm sorry, we've been here for over an hour already and she's had enough." She offered a very empty "I'm sorry about that" in return. If they were really sorry about making people wait for over an hour in the waiting room, they'd find a way to make things run more efficiently. *steps off of soapbox*
Raya was still really emotional when we got to the exam room. She was angry and screaming one second, and sad and crying the next, then smiling. It's hard to be 3 and have to go to so many doctor appointments where everybody is making you stand on scales and get your head measured and your blood pressure taken and wants to see you naked. And I mean that, it really is hard, especially when it cuts into naptime and happens so often. She was throwing such fits that I couldn't hear myself think, let alone answer the MA's questions. I also realized once we got there that I wasn't sure what the dosage of Raya's new med was in milligrams so I just had to give them my best guess. I'm usually so on top of things like that.
While we waited for the surgeon, I tried to occupy Raya by getting her to look at the Peanuts characters painted on the walls. We thought Linus was interesting. Without knowing the what the ideal G tube placement is for a cartoon character, it was hard to tell whether he was recovering from a G tube removal surgery or an umbilical hernia repair but he was wearing a bandage on his belly.
It made Raya forget that she was upset about whatever it was that she was upset about for a few seconds. Right after I took the picture, the surgeon came in to check things out. Raya has gotten really defensive of her stomach recently and it's been much worse since the scar tissue removal. She wouldn't let the surgeon see her G tube until he asked her nicely to lift up her shirt. She's developing boundaries for other people now, which I suppose is a good thing.
Her stoma didn't look too awful but it's really not where I'd like it to be. Here's how it looked yesterday just before the surgeon came in to see it:
Could be worse but could definitely be better. I told him that I knew this was a risk, but that I had really hoped it would heal better than this. I'm afraid by the time the granulation tissue goes away and it heals over, she's going to have just as much scar tissue as she did before the surgery but we knew that was a risk. Even so, I feel like it was the right move and I still think we can salvage it.
He did a silver nitrate treatment but only on the inner edge of the stoma where the new growth comes from. We'll keep doing them 2-3 times a week and have another follow-up in a month to see where we're at then. I'm really not excited about doing silver nitrate on her at home again but it does look better today than it did yesterday so maybe it will be worth it. We'll keep doing all the other things we've been doing too (using Mepilex dressing, calmoseptine ointment, taping the extension tube, changing the dressings 2-3 times a day, etc.) We've almost always taped the extension tube straight across the right side of her belly, which is fine, but sometimes it starts to make the granulation tissue bulge on one side so I'm trying to alternate positions with the tube. It's hard because Raya is really picky about things like that. She doesn't LIKE having it taped anywhere else. This is the other way we do it (when she'll leave it on):
It bugs her and she hates it but she also doesn't like the feeling of ripping tape off so for now, it's on.
We checked into the surgeon's office at 1:20 and checked out at 2:55 and the surgeon was in the room for LESS THAN 5 MINUTES of that time. Don't get me wrong, I love our surgeon, but that is just ridiculous. It's too bad we can't do call-ahead check-ins there like some of the emergency rooms advertise where you check in over the phone or online and they give you a time to show up so you don't have to wait for hours to be seen.
The girls ate suckers on the way home so Raya didn't go to sleep in the car. (I ate suckers on the way home too. 2 of them. I totally earned them.) She was tired & crabby but still happier than she had been at the doctor's office. We did her "nigh-night medicine" and she fell asleep on the couch exactly 50 minutes later. I still have mixed feelings about using it but right now, the positives are outweighing the negatives and it's a tiny dose so we'll stick with it a while longer.
And to end on a gross but funny note, you know you're a tubie momma when you walk past a puddle of puke on the sidewalk on the way into the surgeon's office and catch yourself thinking, "Hey, I wonder if that's from anybody we know!"

1 comment:

  1. I hope she heals quickly. Granulation was never an issue for DD. With DS, it is our nemesis and Kenalog is our best friend.

    It may not be to your benefit (if it helps her rip the tape off) but have you tried Cavilion skin prep? We use that first, then tape, and the tape comes off almost painlessly (I've even tried it on my arm...). We asked Santa for some Tubie Whoobies (the elves are working on it), but meantime we have to change DS' gauze 2-3 times/day, and it has made things so much easier.


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