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.
12 comments:
I'm glad she had her surgery and is recovering well. One of the reasons I want to do pediatrics is because I want to form relationships with my patients and their parents and be there throughout whatever issues may arise.
Stick with the school and the shadowing and stuff, it's a long road but it's definitely worth it. You can email me through my blog if you ever have pre-med questions :)
And just think of how hard it is for you - who knows the system by now, from both sides - and then imagine those who don't have the resources to figure out the system....it is a mess.
But, there are so many good people, as you said, I am glad you have found so many of them. Now, go, be on of them yourself :) You can do it, you have made it this far.
(re-written because the last comment said "no" instead of "now" :))
Always interesting in the Tars' household! :)
Glad all is well now.
Ugh. Sorry you had such a crappy experience. We as providers get in to trouble 9 times out of 10 when we don't listen to the parent. Most often, he or she is right. You should have been able to pop up to their clinic and have them tell you there that you were going to have it done that day or to give you a time for the next day, rather than having to wait in the ER! That's bogus.
We're an almost-all Mic-Key button land up here. Haven't seen too many problems with balloon ruptures but when they do, the replacement can be done in the office, in the hospital with moderate sedation if needed, or at home by a well-trained parent. Depends on how much you want to be bothered with it, I guess.
I'm so sorry she's had such a rough few weeks. I love reading posts that tell us how normal (well, normal for KayTar) everything is going. I hate reaading posts that tell us she's having yet another issue that is hard for her. LOVE reading about good health care and know that you will join the ranks of them one day.
Gah, that sounds awful! Jerk surgeon is on my list. How hard would it have been to schedule you BEFORE you stayed all day in the ER catching who knows what? Glad you see the silver lining. Hope K can stay far away from hospitals for a long long time!
you know my head exploded when I got to the part about the surgeon wanting to change the tube at the bedside. GAAAAHHHH you have the patience of a saint.
J has a mickey and I can see the appeal of a lower profile button. that said, I can also see the appeal of switching it at home but I haven't had the pleasure yet. So far only unsedated, restrained screaming at the hospital.
How many tubes have you been through? The balloon in Js mickey has never ruptured. We were advised to keep it slightly underfilled - 3ml h2o vs the 5ml.
What you go through. It helps me keep my sanity.
Stick with it, K!
The Mic-key takes all of 5 seconds to change out and absolute no OR time when it needs to be replaced.
What's not to love about that?
I will say we had serious leakage issue, but I think that was largely due to Jakie's thrashing from side to side then it was the actually button.
I had been wondering what the deal was with your extended stay in the ER the day before. Now I know...and I'm not too fond of that surgeon myself after reading that!
Yes, you get to deal with more medical issues at home than almost anyone I know, but I love that it only increases your passion for medicine. You're going to be one of the ones that makes the "mess" more bearable and that touches the hearts, not just the physical lives, of those you will treat.
she looks like a NOLA girl. :)
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