Tube brands- Differences between the AMT G-Jet and Mic Key GJ

I wrote about GJ tube brands some back in this post in 2015 but since writing that post we had not heard anything more about changing brands so we figured it was not an issue. We were happy with this because we feel like the brand Jillian has is a good tube for her.

However when Lydia got her GJ button on Friday she came back to me with a different brand of tube. I was not happy about the brand switch. Let me explain to you why...

Jilli has a AMT G-JET
Lydia has a Mic Key GJ

1. Size difference between the G and J ports. To access the ports in a button you use extension tubes. On the AMT the G side and the J side are each accessed with a different size extension that way you can not accidentally connect the G into the J or vise versa. Connecting the wrong one into the wrong place could have very bad life impacting consequences for my children. Nurses work hard and are very busy but we have had more then once where they have tried to hook up a feed into the wrong port however they were stopped because the extension would not go in. To me this is a big safety feature that protects my kids. The Mic Key does not have this. Both the G and the J are accessed with the same size extension making it easier to connect it in the wrong place. We also already own many extensions for the AMT and while the J extension for the AMT and both port of the Mic Key use the same size extensions, we own a bunch of g extensions that wont work with a Mic Key.

2. Stabling arms. The AMT has a more clover shape to it, this helps it from tipping and makes it so we are able to tape it so it does not spin (not spinning in important for GJ tubes as spinning can cause the j part to coil into the stomach, and if that happens they would be fed into the stomach which for my children is bad!) I had an article published a few weeks ago about how we tape Jillian's AMT button. It works great and has for 3 years. Her button does not spin at all how we have it taped. The Mic key is more like a block. I have tried taping it however it is still moving. That shape of the outside of the tube makes a difference here.  Also because of the shape difference it is a lot easier to tip the Mic key up and down then it is with the AMT. Tipping like that makes it more likely to get pulled out which is a big worry of our PT after she looked at Lydia's tube today.

3.  Port cover. On the AMT each the G and the J each have their own silicone cover. They are labeled and open independently of each other. This is really helpful because Jillian is fed into the j 19 hours a day but her g is only drained overnight most of the time. The tubes have a valve in them that make it so nothing should go in or out of the tube without there being an extension in it however with frequent use these valves stop to function. On Jilli's tube that is not a big deal because when she is not using the g there is a silicone cover that goes over it as well that makes it so it does not leak, however with the Mic Key there is one cover that covers both ports but to access the J you have to have the g uncovered. I don't know why anyone ever thought this was a good plan. Jillian uses the j many more hours in the day then the then the g so if the g does not have a cover on it, it will leak. Our option would be to leave the extension in it all of the time but that adds to things connected to the tube.

4. Size. The AMT smallest size is a 14fr. while the Mic Key's smallest size is a 16fr. Fr size is the diameter of the tube; bigger the Fr the bigger the tube is around. My kiddos are little. Because it is a GJ tube it runs through the pyloric sphincter how big the pyloric is being held open matters. You want to keep that as closed as possible.

So there are 4 quick reasons off of the top of my head about the differences between the two. There are other technical differences but these are the tangible easy to explain differences...

So when IR handed me Lydia on Friday with a Mic Key instead of an AMT it is not surprising that I looked at them and asked why she had that brand of tube in and they told me that they did infact switch tube brands and were now only stocking the Mic Key. Again I asked why. First I was told because the Mic Key is cheaper which I am sure the look on my face was less then impressed... A feeding tube costs hundreds of dollars... they charge my insurance company THOUSANDS to put it in my children. A procedure that my children are wide awake for, lay still on a table and is over in about 10 min. I understand that is not how it is for all children, but it is for mine (some kids need sedation for it). The Mic Key being cheaper is not an acceptable reason to me.
Then he said that the sales rep said that parents don't notice a difference between the tubes. This is where I laughed because I am on multiple feeding tube groups and have been on many conversations with many different people about why most people like the AMT over the Mic Key. Sure you will always find someone who for some reason likes the Mic Key better but the majority like the AMT better and have reasons for why they like it better. I conducted a poll this weekend and no one that responded said they see these two tubes as the same. So the sales rep can say all they want that parents don't notice a difference but they do.
They said it was kind of too bad because they have switched brands and will not carry AMT any more so we can not get them placed any more.

We then left IR and that was the end of the conversation.

Fast forward to today... Jilli had PT. I cancelled Lydia's because her lungs still are not happy but Lydia was with us. The PT asked about things last week and I showed her the new button. She started listing her worries about this button brand and then called the OT over who has been an OT for many years and she took one look at the button and said "oh, you have that button" in a disappointed tone. They both knew by looking at the button its draw backs from the one Jilli has. The PT said from a PT standpoint Lydia's button has multiple draw backs and she was not happy. She also was not happy that whatever was growing in the tube was not cultured because we have no idea what was growing, what caused the growth, or if this same whatever is going someplace else in her body.

After Jilli's PT we headed to our ped for an appointment for Lydia. She said Lydia's lungs still don't sound great but they sound better then they did on Saturday. She said to keep doing nebs every 4hr for the next few days. Our PT had called our ped while we were driving there and expressed her concern with the tube brand switch. The ped asked me what the differences between the two brands are and I explained to her what I wrote above and she said that there was no way you could call those two brands the same because one obviously has many benefits over the other. She said to talk to GI and see what we could do to keep the AMT in Jilli and get the AMT in Lydia at her next change out.

This afternoon our PT called me. She had called IR to talk to them and express her concerns. She told them first she was worried that they didn't culture it and they said that they were not too worried about infection and she said that from her point of view as someone who has a clinic with medically fragile children in it all day infection risk is a big thing to her and to have one of her kids growing something repeatedly and them not to take a simple culture is not acceptable to her. They said they saw her point of view and agree it probably was not the best choice. She then brought up how my children are mobile and how she understands because she works with the same population that many kids who have GJ tubes are not but several of the issues with the Mic Key are bigger issues in kids who are mobile. She also told him she does not like how much this new tube moves and how despite trying to tape it, none of the tapes are working. She expressed to him the pyloric issue and how back flow from the pyloric being stretched farther causes issues in my kids and how when they reflux more it makes their muscles weaker. He told her they had not thought about any of these things but that they didn't switch because of money (like I was told) but because they don't notice a difference between the tubes. She explained to him that there are many differences and while they might not be differences that IR deals with they are differences that we deal with and that they need to look at children as individuals and that their actions and choices have an effect on the total child and that they need to think of what is best for that child. She asked him about going back to an AMT and he said they are never going back and she told him that what if the AMT was really better for my children and he said oh. After she talked to me she was calling the special needs clinic but I have not heard yet about that conversation.

It is not that I am upset that Lydia has a button. Her peg HAD TO GO! It was growing something in it and causing her to reflux into her lungs. I am thankful that they agreed to do a button before the 10kg mark because putting a button in was less invasive then a new PEG which would have required a surgery. I am thankful that they went in on Friday and fixed the problem... what I am upset about is the brand change with no clear reason (they told me money but our PT it was nothing to do with money). There is a difference between the brands and a difference enough that I strongly feel that one is better for my children then another. Not to mention the fact that with using AMT we have not have ANY button issues in 3 years with Jillian. Why rock the boat?! I also sent our GI a message about this because Jilli needs a tube change in April and I want this figured out before then.

So its another fight. Flight is the life of a special needs parent. I am always respectful when I fight and always talk to the professional with respect however sometimes it gets tiring to always being in a fight with someone about the needs of my kids... but I keep doing it because I am their mom and it is my job to fight for what is best for them. God granted me the privileged of raising them and it is my job to try to do that the best I can.



On top of that today we got the call about the van... the transmission is totally gone and to fix it would cost more then the car is worth. So now we need to figure out getting a new van. Somedays being an adult is hard. We need to figure out what we are going to get (probably and Oddysy or Sienna) with low miles and in our price range. I am praying that God has the perfect van picked out for us but I will admit right now this is stressing me.

Jilli's AMT G Jet

Lydia's Mic Key GJ tube

Righ now Lydia is doing another neb. I'm trying to distract her with Baby Einsteins. Yes we let our children watch TV during nebs because its how we get them to be calm.