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Advocating for my child

I mentioned a couple weeks ago that, for many reasons, we had decided to switch Raya's G tube out for a GJ tube. We had come up with a good plan and I felt good about Raya having a GJ tube again. Then after I hung up the phone from talking to the radiology scheduler, a wave of anxiety washed over me as I thought about the actual process of placing the tube. Even though I knew that trying the GJ was what we needed to do, I was completely overwhelmed by dread and anxiety just thinking about putting Raya through that process.

Rewind with me for a moment, back to September 2010. Our first experience with getting a GJ tube (or rather TRYING to get a GJ tube) happened when Raya was 9 1/2 months old. She'd gotten her Bard button about 5 weeks earlier, and had started vomiting brown blood, meaning that she had a slow, chronic bleed somewhere in her stomach. Her GI decided to do a scope and found that a large lump of tissue had formed adjacent to the bumper that held the tube in her stomach. She and I had talked prior to the scope and had decided that it was time to try doing a GJ tube to see if that helped with her vomiting, so the plan was to take out the Bard button during the scope and have interventional radiology (IR) put in a GJ tube while she was still under anesthesia. Unfortunately, the right hand wasn't talking to the left hand that day and it did not end up happening that way. Instead, they stuck a Foley catheter in her stoma and we had to wait for IR to have time for us, which meant that Raya was fully awake and was a mess from the anesthesia. That was the first time she really had a hard time coming out of it nicely and was like a wild animal. With narcolepsy. Really. She would wake up screaming, crying, and thrashing around, and then just pass out again. It wasn't funny but I laughed about it so that I wouldn't cry.

Finally IR was ready for us. This was the point at which I learned that parents are not allowed into the IR department at our hospital during procedures. I wasn't happy about that and Raya wasn't either. I was also told that they would not be using any sedation. After 20 minutes, the radiologist came out carrying Raya, who was beet red and sweaty, and crying that sad, pathetic, hoarse cry that happens after a child has been screaming for a long time. She was the embodiment of the term "hot mess". As the radiologist handed her over to me, she said, "Well, if you want a GJ tube, her surgeon is going to have to revise her G tube site because there's no way I can get one in there with the way they put her G tube in. It's anatomically impossible. I put a MIC-KEY button in for now until the surgeon decides what he wants to do." I was taken off guard and rather stunned by that result.

For another month, we dealt with Raya vomiting blood. Looking back on it, that was a horrible month. As positive as I tried to be, and as hard as I tried to take care of my baby, I felt like things were spiraling out of control. On a Monday morning in the middle of October, the vomiting had reached the peak of its violence. By that, I mean that her vomiting and retching episodes were getting more and more violent. It was horrible to watch. That morning, I had decided it was time to tear apart the pack & play that she was sleeping in and scrub it the best I could to try to get the Neocate vomit smell out of it. While I had it upside down in the kitchen and covered with soapy water, Raya took a nap in the temporary little "corral" I had made for her with the baby gate in the corner of my room. In the absence of a mattress, I had put down a waterproof pad and some blankets for her to lay on. I don't remember all the details now but I must have heard her vomiting at some point. When I went to clean up and check on her, I saw that she had vomited chunks of blood. They were small, but there were a lot of them. I emailed the picture to our nurse and asked her what to do with my poor kid. Soon after I sent the email, she called me to let me know that the GI doctor was admitting us and she would call me to let me know when there was a bed available for Raya at the hospital.

After a couple days of gut rest, it was time to try another GJ placement. This time, since there was an IV in place, they were merciful enough to give Raya some Versed to help calm her down for the procedure. It worked beautifully, and within about 10 minutes, they brought her back to me with a brand new GJ button. Apparently it was NOT anatomically impossible after all. The next 2 weeks proved to be the exact opposite of what I had expected post-GJ placement life to be. Instead of stopping her vomiting, it just changed it. Rather than vomiting formula, she vomited bile. If you've never smelled bile, the best way I can describe that odor is a combination of poop plus the WORST bad breath you can imagine, x10. It is horrid. I felt horrible for her. I've thrown up on an empty stomach before and it was gross, but I never vomited 8+ ounces of bile before like she was doing. It took us 2 weeks in the hospital to get things calmed down enough to go home. The GJ was a godsend for Raya in many ways, but getting to the point of being able to see the benefits in it took much longer than I had anticipated, and the whole process was difficult.


Having that background information should make it easier to understand why I felt so much trepidation about putting her through the process of getting the GJ tube put in. Beyond our previous experiences with IR (none of which had been pleasant, by the way), Raya's last 2 hospital stays had a lot of traumatic experiences. I felt very strongly that we could not put her through a GJ placement and let it be as traumatic as her previous GJ placements had been, so I reached out to a friend who is heavily involved in parent advocacy at our hospital. She had recently done a lunch presentation for the radiology department where she went over some common difficulties that parents had reported dealing with and ways that those things could be improved. She was able to connect me with the radiology manager, who had the radiologist that would be doing Raya's placement call me to discuss our options.

Last Tuesday morning, I talked to the radiologist and we decided that I would give Raya a full nighttime dose of her sleep medicine as soon as we got to the hospital. It takes it 45-50 minutes to kick in, so the timing would be perfect that way, and we felt like that might be enough to keep her calm for the tube placement. Plan B was that if the sleep meds didn't work, we would do something stronger, like an IV sedative. I got off the phone feeling like a huge weight had been lifted off of me and my anxiety almost completely went away. I really wanted to reach through the phone and hug that doctor. (it was not the same one we used to deal with in IR)

There's really no prep required for a GJ tube placement. The scheduler had just told me to not feed her for about an hour beforehand. That made me chuckle a little because if she actually WAS getting fed before that, it would take more than an hour to clear her stomach. Since we were scheduled for a 9:30 check-in and 10:00 appointment, I decided that I would just wait to start her feeds until after the tube was placed since I normally start her at 8:00. Wednesday morning, I got up early and showered, made sure everybody had what they needed, dropped the other 4 kids off at various friends' houses, and Raya and I headed for the hospital.

We got there early so we killed time by sitting in the car in the parking garage and taking selfies.

When it was time, I gave her the medicine and we went inside and got checked in. The only little issue we had was that the lady in admitting sent us to the wrong waiting area. Instead of the one I thought we needed to go to, she sent us to the surgery waiting area. The volunteer had gotten up and left her desk right when we got there so I couldn't check in with her right away and we sat there for about 15 minutes before she finally came back. Raya was starting to get groggy so I asked her if we were where we needed to be and she called IR to find out. Even though I assured her that I knew where I needed to go next, she insisted on walking me there. They took us right back to a room and while we waited for everybody to be ready for her, she fell asleep in the stroller. We thought we were in great shape because she was sleeping pretty hard at that point. They took her into the radiology suite and I went back to the waiting room. About 2 minutes later, they came back and got me and said she had woken up as soon as they put her on the table, and that she wouldn't let them touch her tube. The radiologist said, "I'm not going to force this on her, so we need to go to plan B. We can either place an IV and use a heavier sedative, or we can call anesthesia and see if they have anybody available. If they don't, we'll probably just have to reschedule for another day unless you want to try getting and IV placed." I told her that I'd rather not do the IV option because they are always difficult to place, and ALWAYS traumatic for her. She said she'd call anesthesia and we'd go from there.

Raya and I went back into the room we had been waiting in before. She was scared and sad but she was also being very brave and handled it very maturely.

And then she fell asleep again.

In what I know was an answer to prayer, anesthesia happened to have someone available within the next 5-10 minutes to come and put Raya under. It was also a huge blessing that I had not given her anything to eat or drink that morning because if I had, we would have had to wait until it had been a few hours since her last food or drink. They took her back in and put her under with the mask. She woke up again when they got her in the room, but they didn't have too difficult a time getting the mask on her. It wasn't long before they sent me to the surgery waiting room to wait for her to get to PACU. The only unexpected surprise I had was that they didn't have the correct French size in stock so they downsized her from a 16fr to a 14fr, but I don't think it will be a problem.

In PACU, it took her a long time to wake up because she'd had her full dose of sleep medicine. This is a good thing because it always helps her wake up nicely, but she sleeps for a long time after anesthesia when she has it. Because of Piper's nursing difficulties, I am still very close buddies with my breast pump, which was in the car because I hadn't anticipated being there as long as we ended up being there. If it hadn't been for that, I would have let her sleep it off longer, but I needed her to wake up so we could leave. It's always a shame to wake a sleeping beauty!

The great thing about having a kid that is tube fed is that when you are in PACU, you don't have to wait for the kid to eat or drink anything before they'll let you leave. I had the feeding pump all set up with Pedialyte so after the nurse and I woke her up and I felt confident that she was ready to go, I plugged her in and got her pump running, and away we went.

Here is her fancy new GJ tube (AMT G-Jet):

We headed out the door and I got her settled into her carseat so that I could finally pump before we started the drive home. She fell asleep pretty much as soon as I got her in the carseat.


I picked up the rest of the kids and they all waited on Raya hand and foot for the rest of the afternoon. It's really sweet the way they rally around and take care of her on days like that.

So far, the J feeds are going well and we have not had the major problems we had when she got a GJ before. We've been slowly increasing the feed rate and she seems to be doing fine with that so far. The only things that have concerned me a little are that she still has very little interest in eating much and she seems to get full really quickly, and that even 5 days afterward, she is still having effects from anesthesia. Her sleep schedule has been completely out of whack since Wednesday, as evidenced by this accidental afternoon nap on Saturday:

Her sleep medicine is not making her go to sleep this week. I'm still holding out hope that it's because of the anesthesia but I will cry if it really doesn't work for her anymore. On a positive note, she has been much more calm than usual and I have seen an increase in her attention span already. I know the great session she had at OT Friday helped with that, but it's still exciting for me to see a big and fast improvement like that.

Overall, the experience could not possibly have gone any more smoothly considering the anesthesia, and I'm very happy with how it all went. Contacting the IR department ahead of time was definitely the right move because they were very willing to help out however they could. I will most definitely do that again in the future if/when I have concerns about a procedure.

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