Today is Evan’s 1 year G-tube anniversary. G-tubes are interesting things. I hate the g-tube. I love warmly like the g-tube. It’s one of those necessary evil things. He went from a scrawny, failure-to-thrive baby into a little boy who has to wear clothes made for children twice his age. Well, except for pants (he’s afflicted with stubby legs and no buns). I like the tube for the fact that he doesn’t have to taste his medicines. He currently gets 16 doses a day and he can get a lot of meds at once. I like that it isn’t an issue getting him the medicine he needs. It’s also… well… lazy parenting. I don’t have to worry about a kid that doesn’t want to eat or if we have to go somewhere (oh… say… Ann Arbor) and he needs to eat, well we just start the feed in the car – no need to actually stop somewhere. Those are probably the only bonuses aside from the obvious benefit of ensuring Evan grows healthy and strong.
The tube is a pain and I curse it daily but you have to do it so you just deal. It will work for now and we will have to put forth a lot of time, energy, and most of all patience to get him off of the tube. I will love the day when it doesn’t take 1.5 hours to feed my child… every 4 hours. Just exactly how do you keep a 15 month old entertained for that long. We were blessed with such a chill baby who has the perfect disposition for it, that’s for sure.
The day Evan got his g-tube was also the day he almost died. It took us some time after that moment to really grasp what was going on. You can read our posts about it last year here and here. Essentially during intubation, something happened and his heart stopped beating. He received chest compressions and we were told he must not have been down long because children with his anatomy (especially when you are between the Norwood and Hemi) once they go down they don’t come back. I don’t know why Evan was given back to us. Why do we get to go home with our baby? Why do others not?
I don’t think I realized at the time, or sat and thought about the procedure, and knew that Evan was going to be intubated for a g-tube placement. In my head, I thought he would get oxygen support but I didn’t think intubation. It was a lesson I learned the hard way. We opted to go to our home-town hospital instead of going back to UofM. It was passed off as being so casual and low-risk that we didn’t think twice really. I’m sure I would have felt silly going all the way to big ole UofM for my measly procedure. Maybe if I had thought about the intubation more I would have wanted Evan to be around people who handle children like him daily. Maybe if I had talked to someone wiser they would have encouraged that.
I don’t think the people at Bronson Hospital did anything wrong but they are no UofM. Sorry, you aren’t. You aren’t some po-dunk hospital, but you are no center of excellence. Admit those things first. I mean, even after Evan got his g-tube they didn’t even hook us up with a GI doctor or anything. If we ever have questions, we mention them to our cardiologist during our appointments and her team will tell the GI surgeon our question and he might even come down and see us but… he’s the surgeon… not the doctor. Same reason you have a cardiologist and a cardiac surgeon. They are a team. It never really struck me that they just kind of implanted a device in Evan and were like – ok … smell you later – until we were at UofM this past January for his Hemi and we were taking to nurses about his crappy eating habits and they asked us who our GI doctor was. Uh… you guys now… I guess. And it’s all weird because they didn’t do the surgery so they kind of acted weirded out and they struggled to get the documentation from Bronson about it. It’s all dumb. We should have gone to UofM for many reasons, including having all of Evan’s major health issues centered under one roof.
After Evan had his Hemi in January he developed chylothorax and had fluid in his chest that was causing him to struggle to breathe. We were admitted to Bronson during our scheduled cardiologist visit. We said we wanted to be transferred to UofM. They tried but there were no open rooms. So we stayed at Bronson. It’s just fluid in his chest, right? He just needs a chest tube and we could even be in the room when they place it. No big deal, right?
We were in Evan’s room when they placed his chest tube. They use a long stainless steel rod, jam it in the right place between the ribs, and place the tube. There isn’t much to it and I was actually interested in seeing it. Of course the procedure is done under sterile technique. There was an older head doctor and a bunch of other student/junior doctors (listen, I still don’t get the doctor hierarchy so work with me). One of the student doctors would be placing the tube while everyone watched. He was clearly nervous. I’m not sure he had done one before. He put on his sterile gloves but then forgot something and had to come out of the “sterile” environment to get it. He took off his gloves and got it, then whipped out another sterile pair to wear. He struggled to put them on. I watch him as he used his ungloved hand to adjust the fingertips of his sterile, gloved hand. It was a brief touch. He realized what he did, shook his head a bit, and then put the sterile glove on the other hand. No one said anything. Not the other students, not the other nurses, not the HBIC doctor. Not me. He knew I saw him; we made eye contact. And I didn’t say a thing. My education is in Microbiology and I know how to don sterile gloves. I hate myself for not saying anything. Dr. Dirty continued with the procedure and placed the tube.
Two weeks later, Evan was admitted to the hospital for a massive infection. The skin on his chest looked like it was going to pop. I (Sarah) fully blame Dr. Dirty for giving Evan this infection. I’m sure it could have happened when he had surgery 30 days prior, but I don’t think that. Evan’s infection is a notorious hospital bug. So if your dirty hands touched something in the hospital, and then touched a sterile surface, and that surface handled a device that went inside my son, and he then has an infection in that very area… yeah I am going to think that. It very well might not have been, but I’m going to blame the non-sterile SOB because I can.
Evan spent all of February in the hospital fighting this infection. We thought we got it all. It wasn’t until his pacemaker failed in August that we learned that the infection never really went away. It has festered in his body and created horrific amounts of scar tissue. We spent the month of August in the hospital, more surgeries to remove his pacemaker, put one back in another area, and more IV antibiotics. He now has so much damage his surgeon will book the OR for the entire day for his next operation because it will be so complicated. I’m sure it’s a huge factor into why she wanted him to wait until Spring 2014 instead of next year.
We are lucky his pacemaker failed. What would have been the alternative? Septic shock? Other organs implicated? Cardiac arrest?
If I could go and take back this moment I would. It has continuously haunted me since then and will for a very long time. I would be discharged from the hospital. I would drive to UofM and go to their emergency room. They have to find room for you if you do that (nurses told us of that trick). I would speak up in Evan’s room and shame his medical team. I would not give up my education, pride, or my son’s health just to not question authority. Why didn’t I yell at that man?? STOP IT!! YOU AREN’T STERILE!! He’s just a man. I can’t possibly be the only one who saw… other students who were just as green about the procedure I’M SURE were looking as intensely as I was. Why didn’t anyone say anything? He knew he was wrong. Was he too embarrassed to get a 3rd pair of gloves?? It seriously isn’t hard, but maybe it is harder when you have sweaty, meaty paws. Then go a size up you dope!
I seriously want to kick him in the shins. I don’t blame Bronson per se, but I sure as hell blame Dr. Dirty and the HBIC doctor who should have seen or said something.
I didn’t mean to go onto a “I hate Bronson” rant because that isn’t what this is about. I’m trying to get you to understand what it is like to have to put trust in people you don’t know with your most precious resource. Evan almost died getting a g-tube. Who knows what the lasting effect will be from his infection. It sucks to have that type of haunt and guilt – rational or not. I was reading Mia’s family blog and there was one post that talks about this very situation. When Mia was in heart rejection, why didn’t her mom insist on transporting her to a hospital that actually deals with heart kids? Would she still have died – who knows – but those are the kinds of places I am going to bet on. Her mom will be walking hell on Earth for the rest of her life with those questions. I do myself, and my son is alive and well.
You are literally the best advocate for your children. Don’t let anyone ever EVER try to make you believe or think otherwise. Get other opinions. Really analyze situations and when presented with a lot of information ask yourself what they aren’t telling you. Sometimes more local hospitals will look to you as the expert and they may assume you know when you don’t. No one is better than you – they may have studied more but anyone can start studying and learning and understanding.
And of all days… This morning I happened to be running late for work and we were getting him dressed in the morning. I looked at his g-tube site and thought it was rather dry and not as leaky as it had been previously. A tiny trickle of leak came out onto his skin. We figured we should change his dressing anyway to give Nana a nice dry boy. We were shocked to discover that the button in his balloon had burst! For the first time ever on his frickin anniversary. Evan happened to have missed a feeding overnight and good thing because stuff would have been everywhere. He had been leaking so we had been taping his button into place. Good thing because if it had fallen out, his stoma I’m sure would have closed and he would have to have surgery again to have it placed (but at UofM 😎 ) We have a spare and it’s not exactly the right size but it will do until we can get his replacement. Shoot maybe we will like the temporary one better.
