This is officially my last post having to do with "that clogged g-j tube"!! Why?? Because "that" g-j tube is a thing of the past! So here's what's happened in the last 28 hours....
At about 7:00pm Sunday, Peyton's nurse, who was in the last hour of her 12 hour shift, was administering Peyton's meds through the 'g' portion of the g-j tube as usual. She got through a couple, and then something went wrong....again. She felt something leaking and upon examination she noticed the problem. I'll get back to that, but click on the link below so you can actually see what a g-j tube looks like:
The very upper left portion is the "port" end. There are 3 ports: balloon, jejeunal, and gastric. The tube is held in place with a balloon (I'll get to that). The balloon is inflated using about 4.5 cc's of water. The syringe attaches to the balloon port to either inject or withdraw the water depending on whether the tube is being placed or removed. The middle port is the jejeunal port. The feeding pump bag line is connected to this port and all her feeds travel down a thin tube within the larger tube to the jejeunum, which is beyond the stomach. The third port is the gastric port. You connect syringes to this port to deliver her meds through a separate tube within the larger tube where they travel and empty out into the stomach.
Follow the tubing from the port end on down. In real life, the distance from the port to that round flange you see is about 6". The flange rests on the outside of Peyton. It holds the tube in place from the outside, while the tube continues on into her stomach through the hole in her tummy. Beyond the flange you will see black markings. These measure the length of the tubing, so that flange piece actually tightens up along that part of the tubing.
Beyond the black markings, traveling to the right in this picture, you will see a clear bubble looking thing. This is the balloon I was referring to. This picture shows it inflated. This rests up against the inside wall of the stomach while the flange rests just opposite on the outside of the body. So, in reality, that flange piece is MUCH MUCH closer to the balloon - probably less than an inch separates the two.
Everything you see from the balloon to the far right of the tube is inside Peyton's stomach and beyond. The part of the tubing that is black looking is the part that has to be guided under fluoroscopy by interventional radiology as it is the part that is placed in the jejeunum, which is basically the upper intestines - bypassing the stomach. The meds that are administered through the "gastric" port have an opening along the tubing just beyond the balloon so they can empty out into the stomach. The feeds, however, go through the jejeunal port and continue along the full length of this tubing, emptying out at the end into the jejeunum, bypassing her stomach. It helps significantly with her reflux and, in doing so, minimizes her risk of aspiration, or having what is refluxed wind up spilling over into the lungs, which can cause aspiration pneumonia.
So, that's the anatomy of the g-j tube. I'm sure many of you may have been wondering what a g-j tube is, so there's your lesson!
Now back to what happened. The nurse found the tube to be leaking. That happened was she found a tear in the tube, just below where the ports are. It was an "up and down" tear, as opposed to a "straight across" tear. It was about a centimeter or so long. The gastric tube within had ruptured and tore the outer tubing open. This is directly as a result of the ER nurse's improper technique used to unclog her tube back on April 9th.
It appeared that the jejeunal portion of the tubing was still working, so the feeds could theoretically continue, but we stopped everything and went to the ER....again.
When we got to the ER and were in the triage room, I told that nurse exactly what happened that brought us there, including the fact that I'd filed a complaint and how the physician's assistant in surgery wanted herself and the surgeon paged if we wound up back in the ER. We waited a short time in the waiting room before being called back.
We didn't wait too long before we were back in a room, and it wasn't long after that when a resident was in - not a nurse - a resident. Usually it's a nurse you'll see first. She got all the details on what happened that night as well as what led to the rupture. She explained what she would do to get things moving and away she went. Not long afterwards, a surgical resident was down and he explained who his supervisor was and who the attending surgeon was and how they were all going to work on a solution and get us moving. I was thinking, WOW, this surely has to relate to the fact that we were there as a result of a hospital staff member's incompetence. We were getting VERY GOOD service. That surgical resident left and eventually came back with his supervisor. He came in a few times during our time in the ER. The first ER resident was in a couple times as well.
Long story short, as we learned the time Peyton pulled her g-j tube out, interventional radiology is not in on the weekends. Given it was now about 10pm Sunday night, they were trying to figure out how best to proceed. Peyton had missed meds, was going to miss more that night, and was going to miss some in the morning, including seizure meds. They decided amongst themselves pretty quickly that the tube had to be exchanged for a new one. That was a given. You can't fix the tube any other way. However, trying to get someone from IR in on the weekend is very difficult and it was already so late on Sunday. They decided that the best plan would be to actually admit Peyton so she would already be here and they could try to get her in to IR to have the tube exchanged as quickly as possible. Also, I'm sure they're thinking she's missing meds and we need to figure out a way to get them to her or at least observe her since she could be without!
Shortly after 10pm, the decision was officially made to go ahead and admit Peyton. The home nurse had to leave at that point. I stayed on with Peyton. We had no plans to be admitted, I wasn't particularly prepared. I figured we wouldn't be there long, so it wasn't the end of the world.
Being admitted winds up slowing a lot of things down - like getting meds. At about 2:00 this morning (Monday), the nurse was in and was putting an NG tube down Peyton's nose - it goes down to the stomach, so her meds were to be given that way since we couldn't use the g-j tube for meds. Peyton was NOT happy. It was about this time her feeds resumed. Those were resumed using the g-j tube as it was determined that it was safe to utilize the "j" portion of the g-j tube.
Meds got kind of back on track until this morning. We knew she'd be having the tube replaced, so the big question became do we want to have to put the NG tube down at least 2-3 times based on the dosing schedule just to administer these meds, or do we wait til the new g-j tube is in so that it can be used for meds, and then just try to catch up again afterwards. We decided on the latter, so her med schedule is off a bit now, but we're working on getting it back to where it was before.
The tube was replaced late Monday morning, but the whole discharge process took ages. We didn't get home til about 3:30pm!! A little crazy considering we knew from the get go that we were there to have the tube changed and be done with it. We did have a question for the pediatrician there about a bump and redness on Peyton's head. Well, turns out it isn't typical ringworm and isn't a typical fungal infection. So, once again, Peyton has a little bit of a mystery going on. Since it is sort of cradle-cappish, they actually recommended using Selsun Blue shampoo on her to see if it helps. Whatever meds they would prescribe for a fungal infection have so many interactions with the many meds she's on that it really wouldn't be worth putting her on it, especially when they weren't 100% sure of what they were dealing with.
Another perk of the visit was that a pharmacist actually came up and stood in the room while the doctor rounded with the team. She stayed back and spoke with me afterwards. She's the one who has been in much contact with the pulmonary team about all of Peyton's meds for her respiratory illness as well as the thrush that we've been treating for 10 weeks now that isn't clearing up fully. She's actually going to speak with various doctors (pulmonary, GI and infectious disease) about everything that's going on, including all the g-j tube troubles and see if we can get her on some different meds which might be less troublesome for her and us. She's going to be on antibiotics for the respiratory issues for months - we can't be winding up in the ER every few weeks with all these troubles!
So, at the end of the day, Peyton has a new g-j tube and is doing well. People are actively speaking to other people on Peyton's regular team to see what can be done about improving our situation.
A stressful day or so to be sure, but all's well. The formerly clogged and potentially-turned-actually damaged tube is now gone. She still has the tube, but it's brand spankin' new...and if it gives us any trouble, I'm gonna give IT some trouble!!!
Peyton sees the cardiologist tomorrow....will update more on that tomorrow.