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Tuesday, August 20, 2013

A med port to be excited about!

Anyone who has ever cared for a child with a feeding tube (especially a busy, mobile baby or toddler) has undoubtedly experienced at least ONE accidental feed-the-bed incident. (or the floor, or the carseat, or the park swing, or the floor in the grocery store, etc.) These incidents almost always involve the loved but also hated medicine port. In 3+ years of tube feeding, we've tried 4 different kinds of extension tubes with med ports, and I have ended up hating all of them. The port stays closed for the first day, but after a few doses of medicine are administered through it, it starts to stretch. Once it starts to stretch, the cap doesn't fit quite as tightly as it did originally. Moisture makes it slippery. Kids are squirmy and they roll around. Stretched out med port + slippery med port + squirmy, rolling kid = MESS! Beyond just the mess (which smells terrible, stains things, and pretty much ruins your night/day) an open med port means lost calories, lost hydration, lost medications, lost digestive enzymes, and for kids who struggle to gain weight and stay healthy, that is bad news. We got to the point where we wouldn't use a Y port extension tube without taping the med port shut. Since the med port was taped shut, we used an adapter to give meds. Eventually we got sick of that whole routine and stopped ordering or using Y port extensions altogether.
 
Earlier this summer, I was privileged to attend the Oley Conference in Hyannis, Massachusetts. While there, I met some of the lovely reps from AMT. They had a couple of new products on their display table, and I was ridiculously excited about seeing new things. (Sometimes I'm amused by the things I get the most excited about these days.) The one that made me really want to jump for joy (and I would have if I hadn't been in a public place) was their Y port extension with the new and improved med port. I wanted to put it in my pocket and bring it home. I didn't though. :) A couple weeks ago, one of the reps that I had chatted with asked if I would like to try the new extension set and I happily agreed. I was slightly giddy when this beautiful little thing showed up on my front porch.
 

Here are the old and new versions together:

They don't look too different at first glance but there are 2 very cool features about this new and improved extension tube. First, the med port is MUCH more secure and very unlikely to pop open by accident. Second, parts of it glow in the dark. For real. Coolest medical device ever. (It's compatible with MIC-KEY buttons too!)
The glow-in-the-dark feature was what got the kids excited. For the whole first day we were using it, they kept trying to get Raya to go into the laundry room so they could shut the door and see her stomach glow in the dark. When I first caught wind of this feature possibly happening, I thought it sounded neat but wasn't really going to help me much because we don't do any connections in the dark. We are the naughty ones that leave the extension tube connected all the time so that we don't have to try and roll her over when she's asleep to connect it in the dark. That being said, anyone who has the new AMT G-Jet with glow-in-the-dark jejunal port will LOOOOOOVE this feature because it will be POSSIBLE to connect in the dark without having to fumble around or use a flashlight. However, like I mentioned, I didn't think it was going to help us much but that's because I didn't realize that the med port was also going to glow in the dark. That has proven to be VERY helpful since we do give doses of meds in the dark. Since we do leave the extension connected to her button most of the time, the glow-in-the-dark med port makes it much easier to find the end of the extension without touching her, and then give meds a little easier. (we would LOVE to see AMT come out with a Mini One that glows in the dark too!)

The first time we took the extension out of the package and took it in the laundry room to see it glow, I was amazed by how bright it was. The down side to leaving it connected to her all the time is that the connector that plugs into her button loses its charge and since it's under her shirt all the time, it doesn't recharge unless we take it off. The med port did still recharge and glow though, and that was more important to us anyway. Admittedly, I thought the glowing was a little bit gimmicky when I first heard about it but it is actually a very functional feature and I love it and the kids do too! I may or may not have overheard a certain little 3 year old making up a song about her belly glowing...


On that note, it might seem trivial but maybe for some kids who struggle with the fact that they have a feeding tube, having it glow in the dark might make it a little more appealing to them. :)




As fun as the glowing is, the feature that I got really excited about was the new med port. I think sturdy is a good word for it. The old one doesn't look too bad until you compare it with the new one. Side by side, you can clearly see why the new one is such a drastic improvement. It will not open without being pulled open on purpose.
The first time I opened the med port, it was hard to open. That made me happy. It NEEDS to be hard to open so that it will stay closed until you want it to be open! We used this extension tube for about 9 1/2 days, during which time we plugged slip tip, oral tip, and luer slip syringes into the med port approximately 80 times. After all of that, it was still holding as tightly as ever. It did loosen very slightly after the first couple of uses, but it still took 2 hands to open it. BEST. MED PORT. EVER!!!!


I wish that I could say it was 100% peaches & cream, but we did run into one little snag. After about 5 days, we noticed that the pump seemed to be alarming "NO FLOW OUT" more often than usual. We chalked it up to Raya being at school and thought maybe it had something to do with whatever activities she was doing. We then noticed one night that even though I knew exactly how much formula I had put into the pump, the pump said it had fed about 300ml more than what I had actually given her. (no air was fed into her stomach because there was none in the bag) The next day, the pump alarmed several times at school and several times at home, and the volume that the pump said it had fed her was even farther off than the day before. We switched back to a right angle single port extension like we normally use the next day (also AMT) and everything has been running just fine ever since. The only theory I can come up with is that the extension tube was somehow constricting the flow of formula just enough to throw off the accuracy of the volume reading but not enough to cause alarms (aside from the many, many alarms that did go off). The plastic did start to get a little bit stiff the last couple of days just like every single extension tube we've ever used, so that may have played a part in it too. In fairness to AMT, the pump is likely a factor here as well.

If I could change one thing about this extension, I would make the diameter larger so that the tubing would be the same diameter as the AMT right angle single/straight port extensions. (it is the same diameter as the tubing on the current purple Y port extensions & the MIC-KEY Y port extensions) I can't help but wonder if somehow the diameter of the tubing was part of the issue we had with pump accuracy. Aside from that, I am absolutely and completely in love with this extension tube. It may even convince me to change back to using Y port extensions all the time. :)

On behalf of "tubie mommas" everywhere, a huge thank you to AMT for taking an interest in the needs and opinions of the end users of your products and then making changes accordingly!!

*As a side note, if you or your child has a GJ tube, you MUST check out the improvements AMT has made to the G-Jet. If this had been available when Raya had her GJ, I would have done whatever I had to in order to at least try it. The MIC-KEY GJ served us well, but there are features that I would have loved on AMT's G-Jet. They have developed a new anti-kink feature, which I got to see in person, and if I couldn't kink it with my fingers, then I just can't fathom anyone's intestines being able to kink it either. The G and J ports do not take the same extensions, which prevents misconnects. Additionally, the J port on the new version has the glow feature to go along with the new glow extension. It is definitely worth looking into! It's currently available in 14fr and 16fr. See www.amtinnovation.com for more information. You can find AMT on facebook as well.

3 comments:

  1. I would love to get my hands on one of these to try it out. Do you know when it will be sent to DME companies?

    We also stopped using the y-port - we also keep the extension connected (despite being warned not to) because it is just too hard to get our 2.5yo to sit still long enough 16 times per day.

    Your last point is very concerning though. We use a blended diet and deal with enough pump alarms due to that. I don't want to deal with even more alarms caused by extension issues.Do you know if other testers have had similar issues? Is the connection hole the same diameter or smaller as well?

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    Replies
    1. They are currently in distribution so check with your supply company. The reference number to order it with is 8-1257G. On the point of the volume issue, I have not heard of anyone else having this problem. In fairness, our pump could have been part of the problem although we don't have that problem with other extension tubes. The hole where it connects is the same standard size that all AMT extensions are, it's just the tubing diameter that's smaller, and it's the same as AMT's other purple Y port extension.

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  2. That is AWESOME!

    Would it be practical to set up a black-light lamp in Raya's room? It would hopefully not disturb her to turn on in the middle of the night, and it would make her tube light up no matter what.

    ...though of course, anything white in the area would ALSO light up, which is a potential problem!

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