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The continuing GJ tube saga

When Raya's GI and I talked in July about switching back to a GJ tube, I knew there was a possibility that we could run into some of the same problems we had when she had one before, but I really hoped we'd avoid most of them. We did at first. I was pleasantly surprised how simple the transition was in comparison to her first go-round with a GJ tube. {i.e. vomiting copious amounts of bile, 15 days in the hospital, weight loss, the need for constant draining of her stomach & IV fluids, 24 hour a day feeds, etc.} At my request (meaning I begged and pleaded), the interventional radiology (IR) doc agreed to place an AMT G-Jet instead of a MIC-KEY GJ like she had 4 years ago.

About 3 weeks into having the G-Jet, I accidentally clogged the G port when a piece of food she had eaten got stuck in the G port and then got impacted with the dose of her probiotics. After much trial and tribulation, I got the clog cleared. Bullet dodged. We did not have to replace it that time. About a month later, I noticed that it was getting harder and harder to push anything through the J port with a syringe. I thought the tube must have been gunky on the inside and figured that I was fighting against a partially clogged tube. I kept it working for a month, hoping to avoid another tube change so soon after the original placement, since she has to do general anesthesia for her GJ placements. When the J port broke the Friday before last, we had no choice but to change it. We were able to go in last Monday and get that taken care of.

I was afraid that the kink in the first one had somehow been our fault, so I took extra precautions to keep the new one from moving by taping the "foot" of it to her belly:

The next day, we went to OT, and Raya wasn't feeling too great so I had a Farrell bag plugged in to her G port to drain her stomach. During the OT session, what came out was the usual clear yellow bile. Right as we were finishing up though, I looked down just as a burst of cloudy liquid went into the bag. It looked like formula but I was hoping & praying that it wasn't.
The rest of the afternoon, I collected small samples of her stomach drainage and sniffed them to see if they smelled like formula, and they did. {and no, I never imagined that I'd someday be draining my child's stomach into a bag and sniffing them on purpose} I emailed the GI nurse to let her know that I thought the J tube may have been out of position and asked if we could get an x-ray to confirm correct placement but I didn't hear back from her on Tuesday. As the day went on, she progressively felt worse and worse. She had some retching episodes overnight. I gave her some over-the-counter anti-nausea medication through her J port, and within a minute or two, it was coming out into the Farrell bag, which told me that her J was definitely not in the right position. She and I spent a fitful night on the couch together but she felt better after a few hours off the pump that night.

I took Raya to school Wednesday morning and when she came home, I tried to flush the tube and give her the next doses of her meds. Nothing would go in or come out of the J port. Not even the tiniest little bit at all. After I cleaned the sticky medicine off of every surface in the kitchen, I called the GI nurse to let her know that there was something wrong with Raya's tube and that it had gotten worse to the point that I couldn't use the J at all. She said she'd call IR and send the order for a tube change over to them. In the mean time, I didn't want Raya to get dehydrated so I ran a mixture of formula & Pedialyte at a slow rate into her stomach and crossed my fingers that she would tolerate it. The IR department called me in the afternoon to ask if it needed to be changed that day or if we would be able to get by until Thursday morning. She said that if it was an emergency, they could squeeze us in at 5:30 or 6:00 that evening but we have had bad experiences with being squeezed in for things and I felt like Raya would probably be okay doing very slow G feeds, so I opted for Thursday morning. That also gave me time to make arrangements for the other kids.

Thursday morning, I told Raya that we had to go back to the hospital because her new tube was broken too. This picture pretty much sums up how she felt about that:
Not pleased. We hadn't even had a chance to get the adhesive residue off of her hand from Monday's IV yet. Since it was a crappy situation to have to go back again, I told her she could wear whatever she wanted to and bring toys to play with. She picked a long floral print tunic and a hot pink skirt that looked ridiculous with a long floral print tunic, and I let her. We also didn't bother doing anything with her hair, mostly because it took a huge amount of effort to get everybody out the door on time and we just didn't have the time to do anything exciting with it. She was still pretty quiet but was in much better spirits on the way to the hospital this time than she was on Monday. She played quietly with her toys in the waiting room and didn't seem to be having as much anxiety as she had on Monday.

Things were a lot easier on her this time. The procedure was done in IR instead of on the surgical floor because the flooding from the weekend had been cleaned up. That meant that we were back in the old part of the hospital so it was familiar territory for us, whether she consciously knew that or not. The highlight of her day was when the therapy dog came in to visit her while we waited for IR and anesthesia to come in and talk to us.
I am not much of a dog person but she was the sweetest dog. She let Raya brush her ears, which Raya loved. She also did some tricks for Raya and licked treats out of her hand. We also learned that she is exactly 4 days younger than Raya, so that was pretty neat too. She was a very welcome distraction! Someone from child life also came to talk to her about the mask for the anesthesia but she made it clear that she wasn't interested in talking to the lady and just watched Frozen instead.

We snuggled up under Piper's blankie while we waited. We had accidentally left Raya's blanket at home so I had to steal Piper's from her when we dropped her off at a friend's house. I felt bad but Raya needed it more. She also got another beanie baby. This one is a siamese cat named Snip. When it came time to go into the IR suite, she did start to get anxious.

Before the procedure, the IR doctor who had changed her tube on Monday came in to talk to me again. I had a lot of questions for him and was really unsure of which brand of tube to have him put in. He and I talked for a few minutes and I explained to him the reasons I was afraid to try another G-Jet, as well as the reasons I didn't want to go back to the MIC-KEY GJ. I mentioned the part about the ports wearing out quickly on the MIC-KEY and how it's difficult to keep the G port capped since the cap is one piece. When I mentioned that, one of the IR nurses piped up and gave me the helpful suggestion {insert sarcasm} of leaving an extension tube connected to it 24/7. I politely told him that we had done that when she was younger and that it greatly increases the risk of having the tube get caught on things, like the time that the tube got caught on a chair at the doctor's office and the entire G port ripped out of it. Dude, don't even try to tell me how to do this, mmmmmkay?

Anyway, after I laid it all out for the IR doctor, I told him that I really did not know what to do and asked him what he thought we should do as far as which kind of tube to put in. He didn't really know what to do either and said he would go consult with one of the other IR docs. They went ahead and took Raya into the room to get her put under anesthesia and sent me out to the waiting room. I kind of laughed at that point because nobody had said whether or not the doctor would come back out to talk to me before he got started so I thought they were just going to surprise me with whatever tube they decided to put in. They did come out after a few minutes though. I rehashed everything for the other IR doc and after a few minutes of discussion, he sent the first one back to go ahead with the tube change and stayed out in the waiting room talking with me for about 20 minutes. I asked a lot of questions and he explained a lot of things to me. I'm not sure that I agree with some of what he said but there's nothing I could do or say to change his mind and I do understand where he's coming from with what he said.

Here's the nitty gritty of what happened with Raya's tubes and why we ended up going back to the MIC-KEY GJ. If you don't like technical mumbo jumbo, skip the next couple paragraphs. The first problem is that the material that the J portion of the AMT G-Jet is made of is thinner and less rigid than the J portion of the MIC-KEY GJ. The second problem is that the positioning of Raya's G tube in relation to her pylorus creates pressure on the J portion of the tube. That, in combination with the more flexible tubing and Raya's high activity level, creates a bad environment for the GJ to try and stay in place and functional. What happened to the original GJ and the second GJ that was placed Monday was that the pressure exerted by the angle of her stoma in relation to her pylorus started to pull the J portion back towards her stomach from its position in her intestine. If you think of a garden hose, you can only bend it so far before it will crease an kink. That's exactly what happened to her tube. It got pulled back towards her stomach, which caused it to bend, and it bent until it creased. Before it creased completely, it had gotten close enough to her stomach that what was going into the J port was flowing backwards into her stomach along with a lot of bile.

So that was what caused the problem. The next issue is that our radiology always cuts the J portion of GJ tubes so that the tip of it rests at the junction of the duodenum and jejunum. The reason he gave me for that is because then the tip does not end up resting against the intestinal wall, which could cause a pressure ulcer and eventually a perforation of the bowel. He said that in 30 years, he has never had a perforation and feels that placing GJs differently than their current method with the tube being placed deeper into the intestine creates an unnecessary risk, which is why they always cut them. I had asked about placing the tube deeper to prevent it from retracting into the stomach, so that was his answer as to why they would not do that.

The next issue is the fact that 2 tubes in a row had bent and kinked on us. We had never had that problem in 10 months of having a MIC-KEY GJ. He said that it was the result of the thinner, less rigid material that the G-Jet's J portion was made out of. To combat that problem, when AMT released its 16fr version of the G-Jet, they added a metal coil to the J so that it cannot kink. Our radiologists refuse to use that tube because they cannot cut a J with a metal coil in it or it will most definitely cause a bowel perforation. That left us with a choice between taking another gamble on a G-Jet with no metal coil that we knew would most likely kink again, or going back to the MIC-KEY GJ that I had so many reasons not to like when she had it before. I begrudgingly conceded to the MIC-KEY, knowing that we were just trading one set of problems for another.

I did have a good, thorough conversation with him and I appreciated him taking the time to talk with me, even if it was not really what I wanted to hear. I felt like I had to wait forever for Raya to be done. This time, she was starting to wake up already when I came in so she had moved herself out of that awkward and ghastly looking post-anesthesia position and was resting comfortably.
She woke up a lot faster and was much more alert this time. I assume it was because they forgot to give her the IV zofran and decadron like they had on Monday. She wasn't nearly as groggy. When she woke up, she just wanted to get the *$(%# out of there. If she knew swear words, she would have said them. She was also NOT pleased to see that they had tried unsuccessfully to get an IV started in her left hand and had to go for her foot instead. Her right hand was still bruised from Monday's IV so they couldn't use that and I don't know why they couldn't get a vein in her left one. She was probably a little dehydrated from not being able to use her J tube and she's always a hard stick anyway. Thank goodness she was asleep when they tried to place it.

 Once I got her dressed, she was ready to go. There was a very sweet but very sick little girl in the next curtain over in PACU who was not coming out of her anesthesia very well and was vomiting a lot, and Raya didn't want to listen to it. She really wanted chips, so we went down to the cafeteria and I got her some Fritos. Of course she didn't feel like actually eating them so she just licked the salt off of a few of them while I talked to a mom that I've interacted with quite a bit on facebook but hadn't met in person yet.

I started her off after the procedure with just Pedialyte and continued with Pedialyte through the evening. On Friday morning she said she felt good so I started her out with full strength Neocate Jr at her usual rate of 100ml/hour. Before long, she was feeling uncomfortable and asked me to connect a Farrell bag to her G port to drain her stomach. The older kids got out of school early for parent-teacher conferences and Raya didn't have school that day. I had a meeting with Raya's school staff that morning (which we were almost late to because her respite provider was late and had to meet us at the school instead of coming to the house) and then in the afternoon, I had conferences with all 6 of the teachers for the older kids.

As the day went on, she started feeling worse. Due to the amount and color of the bile coming out of her stomach, I decided I would keep her with me at the conferences. As we sat outside one of the classrooms, I took her Farrell bag out of her backpack and was a bit shocked by what was in it. Within a few hours, she had drained 450ml of dark yellow bile from her stomach and was still complaining of belly pain. It had been a really long time since I had seen anything like that from her.

After parent-teacher conferences, I took her to a birthday party for her friends from church (twins). The kids were painting little wooden treasure boxes and when I looked over at her, I saw that her hands were shaky. She just looked like she didn't feel well. About 10 minutes later she and I were standing in the kitchen and I asked her for about the 10th time if she felt okay. I think she said something like, "I don't feel good." and then I could see the puke face coming. Conveniently, we were standing right next to the garbage can so I opened it and stuck her face over it so she didn't throw up on their kitchen floor. They are very sweet people and were totally understanding but it still feels pretty lousy to have your child vomit in someone else's garbage can during a birthday party. Thank goodness Raya's friends aren't old enough to notice things like that. She felt a little better after that so we stayed for the rest of the party, but then for the rest of the evening, she just laid around and didn't feel like doing much of anything. To reward the kids for their good grades, I let them each choose what they wanted to eat for dinner and then drove to 3 different restaurants to get everybody's take-out. Ashtyn picked a sandwich & salad, Cole & Kaida both wanted Panda, and of course Raya wanted Chick-fil-a fries & sauce. By the time I got home with all the food, Raya didn't want anything to do with hers. I made her sit at the table long enough to get a picture and then she was ready to lay down again.

 I added Pedialyte to her formula to help make up for the fluid she had lost from her stomach and continued to run her pump overnight. She drained an additional 150ml of bile overnight and woke up several times that night. On Saturday, she started out feeling better than she had the night before until I started her pump. We went to a few garage sales that morning and then came home and I got her feeds going. I slowed the rate from but kept her on full strength formula to start with. Throughout the day, as I would empty bile from the Farrell bag, I measured it and added an equal amount of Pedialyte to her pump bag like we used to do when she was younger. She had a few episodes of retching later on in the afternoon and evening on Saturday and I noticed that her urine output was lower than normal. I called the hospital and had them page the on call GI for me, and after discussing everything with her, she thought it would be best if I continued to focus on keeping her hydrated at home but said to bring her in if she stopped peeing. It was around that same time that Raya told me she thought she would feel better if I turned off her formula, so I switched her formula out for just Pedialyte and ran it at a rate of 65ml/hour. Saturday night was rough. She had several retching episodes overnight and some awful explosive diarrhea at about 4:00 in the morning. {did I mention that Donny was out of town all weekend?}

She continued to drain about 400ml of bile from her stomach on Sunday. She had a pretty rough morning and just wanted to lay on the couch, which is not normal for her. Her facial expression was very serious all morning (in between retching sessions) which is also not normal for her. She just felt awful.

By afternoon, she was starting to perk up and feel a little better. She took a shower and then spontaneously decided to lay down on her bed and take a nap. That has not happened in about 2 years. I didn't want her to go without calories for very long so I started mixing half formula and half Pedialyte that night and continued to feed her that way on Monday, at a rate of 75ml/hour, which she seemed to tolerate okay. I went back to full strength formula Tuesday but kept the rate at 75ml/hour, and it has gone okay. Not great, but okay. She still seems more tired than usual and every time I ask her how her stomach is feeling, she tells me it hurts. She hasn't drained as much bile the last few days, which is good, but she is still losing an average of 200ml/day of fluids, and added to the formula she has to get in order to hit her calorie goal, we are back to 20 hours a day on the pump. I don't think I need to explain how crappy that is.

The other unfortunate thing we've dealt with yesterday and today is granulation tissue and a gunky, sore stoma. She has not had granulation tissue since her scar tissue excision almost 2 years ago. Her stoma is normally clean, dry, and healthy. Since Thursday, it has been weepy, gunky, and sore. I blame it on having a tube that is too short. She really needed a 1.7cm tube for the MIC-KEY GJ, not a 1.5.
I know it doesn't look that gunky but that's because I'm really picky about keeping it clean. I cleaned the gunk off with a wet Q-tip and then put Calmoseptine ointment on it with a piece of gauze over it to soak up the leakage and keep it from irritating her skin, and keep the Calmoseptine from getting on her clothes.

I am not giving up on the GJ tube yet, but this last tube change has been really disappointing and disheartening. She had done so well with the G-Jet other than having it kink in her stomach (which is obviously a big problem) and it was great to finally see her feeling good, enjoying several hours a day off of the pump, and interested in eating again. Hopefully what we're seeing is just because her body needs more time to recover from the tube change and things will keep improving motility-wise. It is frustrating to go so far backwards again and heartbreaking to see her feeling so lousy.

The really sad part of all of this is the difference in her personality. We have seen time and time again that when she doesn't feel well GI-wise, her sensory issues get much worse. That has happened. What has also happened that I have not seen as much of before is that her ability to communicate has gotten much worse. She doesn't want to talk much, especially when something is bothering her. We were at a birthday party at a park this morning for one of her friends, and she never said a word to any of the other kids that were there. She went off by herself and dug in the sand the whole time. She would stop every so often, come over to where I was, and with a distressed look on her face, she would shake her hands at me to indicate that she wanted the sand off. Even though the party was outside, there were a lot of kids there and she just seemed overwhelmed. Most of what she did say to me was in 3-5 word phrases, like "Too many kids." and "Let's go." She did a lot of vague pointing and gesturing instead of talking. The kids all got their teeth cleaned yesterday and in the past, she's done great with that. Last time, she even let them use the polishing tool and do bitewing x-rays. Yesterday, she wouldn't even get on the table. I had to hold her on my lap and do a lot of begging, pleading, and bribing to get her to let the hygienist near her. It was by far the worst cleaning appointment she's ever had. They could barely even get a regular toothbrush in her mouth, and trying to get the fluoride on her teeth was a joke. She has lost all trust in medical people again and goodness knows how long it will take or what it will take to get that back again.

 Seeing this much regression is hard, and it is scary when I think about the possibility of her losing her IEP and going forward into kindergarten without the protection that an IEP offers. I mentioned that we had a meeting with her school on Friday. It was the first meeting in her kindergarten transition process, which completely caught me off guard since I didn't know we'd be starting that process so early on in the year. The thought of sending her to full day kindergarten at the school she will be going to makes me physically ill. It's not that there is anything wrong with the school or the staff, but I can't even put into words how it makes me feel to think about turning her over to ANYBODY for 7 hours a day. They have no idea what that will be like for her. It was mentioned at the meeting that they will be doing a re-evaluation this month since her IEP meeting is due next month, so the re-evaluation will determine whether she is still eligible for special education services or not. I'm sure it wasn't meant this way, but to my ears, that sounded like "The next meeting will be the one where we take away her IEP." There were other comments made like, "I hear she is a completely different child than she was when she started preschool." and "You know if she doesn't have an IEP she can still have a 504 plan for her medical needs."  I don't know if they are insinuating that they don't think she will continue to qualify or if those statements are just meant at face value, but they have no idea what it's like to be the parent that is hearing those things. They have no idea how terrifying it is for me to think of having to try and get people to understand Raya's needs and work with her in a way that works for her without the safeguards of an IEP. It bothers me to think of moving into kindergarten without an IEP for a few reasons, but mainly because none of us have any idea what deficits may present themselves when she starts actual elementary school. She has done great in preschool, but kindergarten is a whole new ballgame. She WILL continue to struggle with her medical challenges, and seeing what she has gone through in the past 10 days and the regression we've seen this week alone, it really scares me to think that she may have her IEP taken away and be left without the protection that it provides her. This may sound terrible, but I have found myself hoping today as I've seen her odd behaviors, that I hope they have a chance to see what she is like right now once fall break is over so that THIS Raya will be taken into consideration on the teacher's portion of the evaluation. If she's going to feel like crap, I hope she feels like crap when the speech teacher is doing her portion of the evaluation so that she refuses to communicate with her too. I just need them to see how hard it can be for Raya when she isn't feeling well, because that is just part of life for her. I don't ask for prayers often, but we could really use prayers that the school district does right by her and does not take away her IEP.

I really didn't mean to go off on that tangent but that's just another example of the collateral damage that can be done by something as seemingly simple as a tube change. I don't know what the next few weeks will hold for her, but I really hope the school district doesn't add to my already skyrocketing stress level, and that we can figure out something to help get Raya feeling better without having to lose the potential benefits of having the GJ tube.


  1. Have you thought about a separate G and J tube scenario? How's she doing today since you haven't had much time to update?

    1. Doing a separate G and J is a pretty serious step. J tube stomas are much more difficult to keep healthy, so we'd like to avoid that if we can. She's feeling a little bit better this week but still struggling.


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