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Wednesday, August 1, 2012

For anyone who has ever been scared to put a G tube back in...

**Proud Mommy Moment Alert**

I have awesome kids. 4 of them. They are each amazing in their own ways and I know I often take for granted what a great helper #1 is. She's the best big sister the other 3 could have asked for. In the past few months since Raya has been on bolus feeds and much lower maintenance during the day, I've felt comfortable leaving her with a couple of friends here and there. Before I leave her, I always give them the oh-so-intimidating "This is what to do in case her tube gets pulled out, but don't worry, it won't get pulled out" speech. A couple weeks ago, I was leaving the kids with a friend while Donny and I went somewhere for a couple hours and as I was going through the emergency kit showing her what to do, she kept saying, "But nothing will happen right? Does Ashtyn know what to do?" And I told her that Ashtyn had seen me put the tube in enough times and I had explained it to her enough times that she should be able to talk her through it if the tube did get pulled out. It didn't then, but it did today.
I usually leave the extension hooked up with it taped to her belly but since I just put in a new tube last week, I didn't want to ruin the backflow valve already so I've been disconnecting her between feeds like a good caretaker. :) The skin on her stomach has been so sore and ripped up from tape that I've been taping the tube to her diaper instead, which is fine and dandy until she takes her backpack off and wants to carry it around. This afternoon I had asked Ashtyn to stay close to her and keep her tube from coming out but accidents happen and Raya popped it out.
Normally, I just spring into action and put it back in but I decided that there's no reason that at 9 years old, Ashtyn can't learn how to put the tube back in. If she can change a diaper, she can put a G tube in. :) (I was also inspired by two amazing boys about Ashtyn's age who can change their own G tubes.) I asked her to run and get the emergency kit and told her she was going to put it back in this time. (Note: Raya has a very well-healed stoma that is nice and straight with no granulation tissue and she's good about holding still for button changes or else I wouldn't have done this.)

Here's some of what's in our emergency kit:
There's a syringe of lubricant, a pre-filled syringe of water for the balloon, an empty 6ml luer tip syringe for pulling water out of a balloon, a spare G tube, gauze, tape, gloves, and Q-tips, which I'll explain later.
I thought she'd be a little intimidated by it but she was excited. I started by reminding her to wash her hands with soap & water (and getting the camera so I could take pictures while she did it, of course). When she came back in her room, I asked her what she needed to do first. She got the 6ml luer tip syringe out of the bag, plugged it into the balloon port, and pulled all the water out of the balloon.

Then I asked her what she needed to do next. She got out the syringe of KY Jelly and put some on the stem of the tube.

I told her to put some on Raya's stoma too. She has a very thick band of scar tissue around her stoma that can make it tough to get the tube in without plenty of lubricant.

The next part was the only part I did, and that was to put the stick of a Q-tip (with cotton removed) into the tube to stiffen it. (The new one I put in last week came with a stiffener but it was downstairs.) Once the Q-tip was in the stem, I handed it back to Ashtyn and she got ready to put it in.

She pushed a little and it didn't go in. She pushed a little more and it still didn't go in. Those AMT MiniONE buttons are tough to get in as it is and Raya's scar tissue makes it even harder. I told her she needed to push hard and she said, "Okay, I just don't want to hurt her." Just then, it popped in and the hard/scary part was over. Of course Raya had to say "OW!" just for dramatic effect but she was a good girl and held pretty still for Ashtyn. She took out the Q-tip:

I asked her what was next and she got the syringe of water, plugged it into the balloon port and pushed the water into the balloon. (Note: In the emergency kit, I have a syringe labeled with tape that says "water for balloon port" that's pre-filled with the right amount of water for Raya. I would HIGHLY recommend doing that because it's one less thing for someone to remember when they're putting the tube back in, which can be very stressful for people who aren't used to doing it.)

The next part was a little tricky. She forgot that if she didn't keep pressure on the syringe plunger while she took the syringe out of the port, water would get squeezed back into the syringe. Once I reminded her of that, she got all the water in and the syringe out with no problems.

Then she closed the cap:

And she was all done!

Now don't misunderstand me. I'm not saying that she will ever be asked to change Raya's G tube. That is definitely an adult job. At the same time, knowing that she could handle this if there is ever an emergency when Donny and I aren't around gives me peace of mind. It will also take the pressure off of anyone that ever babysits because Ashtyn could at least put the tube in until I can get home and check placement, which would be much better than not having the tube in while I try to rush home in time before the hole closes. Not only that, but I think Raya would hold still for Ashtyn better than for someone else anyway just because she absolutely adores Ashtyn and when she's in the right mood, she'll do whatever Ashtyn tells her to. (wish she'd do that for me...) I've decided that someday Ashtyn can work her way through nursing school by being a respite provider because she would be just plain awesome at both of those things. Seeing how well this went, I will be teaching the other two kids very soon too, although I don't think they'll be putting the tube in themselves. They at least need to know how to walk somebody else through it though.

I'm really proud of Ashtyn. You have to know that she is, for lack of better verbage, my scaredy cat. In a lot of situations, she's timid and reserved and gets nervous, so it's very exciting for ME to see her handle something like putting in a G tube, which most adults shudder at the thought of. In a lot of ways she's still very much a little girl but when it comes to taking care of other people, she is mature beyond her years. How many 9 year olds do you know that would be willing to put their 2 year old sister's G tube back in?  I've talked to a lot of parents who are really afraid of having their child's tube come out and having to put it back in. If you are one of those people, don't be afraid! I promise you that if my sweet, timid 9 year old can do it, you can too!

1 comment:

  1. Wow Ashtyn you are very inspiring to me! Whitney's had her tube for a year and I've never had to replace it myself. Brandis that is awesome and they are so cute together!


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