That flat portion lies on top of her skin, and the tubing goes down into the stomach, where the mushroom hold it in place. Well, the tubing was splitting off of the outer portion and if it had full split, the inner tubing would have falling in and the stoma (hole in her skin/stomach) would begin to close rapidly. Josh said it was only about 25% split, so I headed home and we decided to deal with it the next day. I looked at it when I got home and it was actually about 50% split, and every time we looked at it, it seemed to split more. I emailed our pediatrician and she said to call the surgeon's office when they opened.
The office didn't open until 9am, so I took KayTar to school (with her tube taped, so that it wouldn't get pulled or tugged and split further) and I volunteered in the library as usual for a Thursday morning. I started calling a little after 9am, initially I left a message with the nurse, but because my cell gets TERRIBLE reception at the school, I called back after 10 minutes or so, trying to get someone to tell me what we needed to do. The person who I spoke to said that if it needed to be switched in the OR (which is does, because it is held in place by that hard mushroom which they have to jam a rod into and then jerk the thing back out through the little hole, then do the same thing in reverse to place the new one), then we needed to go the ER to be admitted to surgery. I told her that last time, we came in through the clinic and were sent to day surgery, but she said they couldn't do that. We had to go to the ER. Then she transferred me to the nurse, which was voicemail again, so I called back. I talked to someone else who told me the same thing, then transferred me to the nurse, which was STILL voicemail. I called back again and talked to someone, maybe one of the same people, maybe not...explained the situation and the instructions I'd been given, and they said to go to the ER as well. So we went.
Luckily, our nurse friend M was on! I asked for her at registration and she came and walked us through triage. We waited in the lobby for about 10 minutes before getting called back to finish registration, and by the time we were finished there, M came to tell us she had a room open up! Thank God for small favors. KayTar loooooves M, so having her as a nurse would make the day loads easier...and it really did. She came and chatted with us, took KayTar on walks around the floor, played blocks with us...all sorts of fun stuff. We had absolutely ZERO reason to be in the ER...she didn't need an IV or meds, she didn't need monitoring, she didn't need vitals checks...we were JUST sitting and waiting for surgery to see us, much like we would have done IN CLINIC. KayTar was NPO and acutely aware of this because it was only a week since her fast, so every time she would start to get bored, she would get a little worked up about the no food/drinks thing. The surgical residents came to see us early on, one said they might do it in the ER without sedation and I wasn't coo with that. She sees too many doctors to be majorly traumatized, which is what OUR surgeon has told us many, many times. The rest of the day, roughly 11am-7:30pm was spent WAITING FOR THE SURGICAL ATTENDING. He refused to come down or give anyone instructions for hours. Everyone was frustrated and apologetic, from the nurses to the ER doc to the surgical residents. I was in touch with our pediatrician by phone and text, and she was annoyed with the situation, too. He finally came down a little after 7pm, tried to talk me into letting him do it bedside, which I said no to, and then he basically told me he had enough cases for 12-24 hours and he didn't know what to do with us. I said, "Can't you just send us home and give us a day surgery slot?" It was like he hadn't even thought of that! It took him one phone call and about 45 seconds to get her on the schedule and we FINALLY got out of there.
On the way out, I got a Facebook message from our nurse (who had gotten off shift before we were released) inviting us to dinner at her house with her and her husband. The first thing KayTar had said to M was "I need a BURGER!" and they were having burgers for dinner. I asked KayTar if she wanted to go and she did, so off we went. It was so nice and fun, and it made KayTar forget all the yuckiness of the day. She didn't eat a burger, of course, but she had a little sweet tea and a couple pieces of bacon dipped on mayo (she's all about the saturated fats, that girl). She had been NPO for over 13 hours, so eating anything was good. We hung out for a bit and then headed home, exhausted, but much happier than we were a couple of hours before.
Yesterday was the actual surgery and it was a BREEZE compared to the recent fasting study and day in the ER. There was brief confusion when the surgeon told the anesthesiologist that he wasn't going to do her surgery, so the very kind anesthesiologist found another surgeon for her, but at the last minute the original surgeon decided to do it after all. I got a certain not-so-wonderful impression of that particular surgeon, judging from the level of exasperation EVERYONE who was working with him exhibited over the course of both days. He did his job eventually, and that's all that really mattered in the end. On the way home, we stopped at my mom's for ice cream and then we all went to dinner at KayTar's favorite tex-mex joint. It was wonderful and she ATE. When we got home, she had a fever...not from surgery, but from the virus that had caused her to wake up all congested that same morning. I'm so glad it waited until night to start, because if she had woken with it, we probably wouldn't have been able to do the surgery.
Anyway, that's the latest drama. I missed school the past two Thursdays because we were in the hospital. I was supposed to shadow the pediatrician the past two Fridays, but didn't because we were in the hospital. It sort of makes me wonder what the hell I'm doing with all this school and medicine-related insanity, when I clearly already have enough medicine-related insanity right here at home. I don't know. I don't know what I'm doing...but I do know it kind of makes me want to do it all the more, because the ONLY thing that makes all of this bearable are the wonderful, kind people who are caring for KayTar. The system sucks, there are a lot of jerks and idiots out there and a lot of hoops to jump through, a lot of unfairness in how medical care is provided...but there are a lot of wonderful people in the system who go above and beyond. There are nurses who invite you to dinner after a long day, pediatricians who will talk to you on the phone while they are at home with their own kids, school nurses who research different types of g-buttons for you and send encouraging emails when you are stuck in the torturous throes of a fasting study, ER doctors who are attentive and apologetic when the issue at hand is completely out of their control. There are good people who are passionate about medicine and about caring for people and I want to be one of those people. The system is a mess, but those people...they make it a beautiful kind of mess.
PS: If you have g-button experience, I'd love to hear what kind of button you have and how you feel about it. We use a Bard, which requires the OR switch. The two defects we have encountered are common issues according to the surgeon, and replacement is a HASSLE, clearly. We like the Bard because it is lower profile than the Mic-Key and because although the swaps are a hassle, they are much less frequent than balloon ruptures, especially with a normally active kid like KayTar. We've been looking into the minis made by AMT medical and they look pretty nice. They have balloon and non-balloon versions that seem to address some of the issues with the Bard and Mic-Key. Anyone used those? If we have another Bard failure, we're looking to switch...so we want to research and decide before we get to that point.