Friday, June 26, 2009

Advice Wanted

Calling all nurses and g-tube moms (and dads!)...or friends that give good advice...

Jeramie and I took Ethan to Duke today to have his current g-tube switched out for the Mic-Key button. If you've seen Ethan's tube, you know how bulky and somewhat inconvenient it is. We were real excited to have it replaced with a low-profile, seemingly more convenient device.

However, as the nurse began going over the care and maintenance of this new tube, we began to have doubts.... "If it ain't broke, don't fix it" kind of thoughts. We currently have no issue with Ethan's g-tube, other than the fact that it's so bulky. We were informed that the new Mic-Key button could leak, or even come out. His current tube BARELY leaks and is stitched in place. At one point, I asked the nurse if she was trying to "vote for" keeping his current tube. (Both she, and the surgeon seemed to think there was no need to switch them out.) Her response was that she just needed to make sure we knew the good with the bad, which I can appreciate. I was just a little frustrated that I hadn't educated myself on the "bad" before driving back to Duke for the 3rd time this week. Anyway...

The pros of Ethan's current tube is, as I mentioned before, it works just fine. Although it is stitched in, it WILL eventually come out and will be replaced with a Mic-Key when it does. This tube is also very easy to vent (the process of "burping" Ethan, or letting air out of his tummy). We have to do this quite often in order to keep him comfortable. The cons are that it is bulky and the tubing stays attached (which Ethan has now found and tries to pull on).

One of the pros of the Mic-Key is how low-profile it is. It sits almost flush with his skin, and has detachable tubing (which I love). The cons are the possibility of it coming out, potentially more leakage, and extra care and maintenance that doesn't happen with Ethan's current tube. We were also told by the nurse and surgeon that this tube doesn't vent as well.

After hearing all this information today we decided to not switch out his tube just yet. We're going to educate ourselves, gather advice (that's your part!), and try to make an informed decision. The plan is to go back in a week or two if we decide that we do, in fact, want to switch it out.

So, we need your input. Nurses, what can you tell us from a medical standpoint? Moms & Dads, what is your advice from a practical perspective? Are there any other pros and cons that we're unaware of? Does it sound like we've gotten accurate information thus far?

We look forward to hearing your responses!


Jonathan and Meredith Ellis said...

Hey! Tough call. Here is what I think for now but I will ask others at work this weekend and let you know what I find out.

The mic-key is definitely lower profile and at first, I thought it was better. I have since learned it's not always better. One of the main points is the healing around the site seems to happen better/faster with the tube you currently have because it doesn't move as much. That being said, I understand that once it has healed switching isn't a problem.

Leaking can definitely happen, but I don't see it happen often or excessively. Keep in mind that my patients stay in bed and are not active. As for it coming out, you can learn easily how to put it back in which is really easy. I will have to ask around about venting. I didn't realize there was a difference between the 2 when venting.

I totally understand your thoughts about why fix it if it ain't broke :) If you are dealing fine with it now, might as well not change it, but I definitely understand your desire to switch it.

I'll post again after talking to coworkers and getting their opinions. Good luck!!


ChristophersHeart said...

Our son (also a heart kiddo) is getting a g tube placed in a few weeks. We were told he would have the g-tube like Ethan for about 6 months and then when the stoma was well established and the site well healed with no problems, they would measure him and fit him for the Mic-Key button. We were told that unlike the g-tube he initially is fitted with, we would be able to change/replace the Mic-Key button ourselves and that it would be less obvious/less likely for him to pull on it/get it snagged. (Our little guy is about to turn 2 tomorrow so he is definitely going to notice this new tube in his belly).
I guess for us going to the Mic-Key button was what we were told was the natural next step with g-tubes so we didn't give it much thought. Is there any option of trying the Mic-Key button and if it doesn't work out/leaks too much/can't be vented as well, going back to what you have now?


Crystal in IL said...

Here's my two cents. My daughter(HLHS) had the g-tube surgery at 5 months and at that time she was getting several meds during the day/night and feeds were every 3 hours but it took about an hour to feed her. So the tube was perfect for hooking her up and not disturbing her. She was able to wear onesies to keep her from pulling on it but the tube was long enough to come out the leg hole for easy access. We resisted switching to the Mic-Key for several months (our docs wanted to switch to the Mic-Key about 6 weeks after surgery) but as she got older and more active, was on less meds and her feeds got spaced out further apart and took less time we caved and got the Mic-Key. Having a tube hanging out of her belly was an accident waiting to happen. Onesies are a thing of the past and now we prefer regular outfits for easy access to her button. Venting the Mic-Key is really simple. You will get two types of extention tubes with your kit which you should get replacement kits every month from you home infusion supplier. The tube with the med port on it is the one we actually use to give meds and feeds since it has a 90 degree angle on it and it lays flat against the body. The feeding tube is larger and comes straight out from the button so we attach a large bolus syringe without the plunger in it to vent the tummy. My daughter seemed to need quite a lot of venting when she had the initial hanging tube but once we switched to the button she didn't need to "burp" hardly at all. I think because it's a one way valve so less air is able to get trapped in the tubing so less burping :) As far as leakage goes, if your son is fitted with the proper size tube and the site is kept clean and dry then leaking shouldn't be an issue. The one and only time my daughter had a leaking issue was due to a mild yeast infection at the site. It was easily cared for and we haven't had a problem since. Caring for the button is rather simple. We take a baby wipe and wipe around the site, allow to air dry, paste a dab of diaper ointment around the site and we put clean I.V. gauze pads around the tube base. The gauze comes in a packet of two and we put both pieces on her. We secure the pads with a little piece of cloth tape individually. We usually do the major care cleaning and securing the pads in the morning so if the bottom pad get dirty later in the day we just pull it off and you're still left with a clean pad on :) This probably sound like a lot of work and maybe a bit confusing but once you have a Mic-Key I haven't heard of anyone going back. Change is hard at first but if you find that you simply can't stand the button you can go back to the tube. I'd advise you give it a month before making a decision to go back. I hope some of this helps!

Tracy Mooring said...

I am a pediatric physical therapist in Raleigh who has had many a patients with a Mic-Key button. None of my parents have ever complained or had any issues that I am aware of with leakage, etc. The patients I have had with one are all ages and have varied backgrounds and diagnoses. Hope this helps! I continue to keep Ethan in my prayers!

Anonymous said...

Hi Joye,
Here is my 2 cents...

The mic-key is great when you don't need to do constant venting. It does just need to do it and then remove the tube. Dagen's mic-key leaks and it is a little gross. Who cares...right? You can purchase IV sponges to place around it if you want to soak it up, or just let the clothes do it. It really isn't a big deal after you get used to it. I think our biggest deal is the granular tissue that she grows around her stoma. We have to burn it off and sometimes it bleeds. We have learned that this isn't such a big deal either. I guess time makes everything...normal... Replacing the mic-key is easy!!! You put it in and inflate the balloon. That is it. Shawn does it and I plan on teaching my mother in-law. After it is placed, you will want to check the balloon and refill it as needed. We LOVE Dagen's mic-key. Good luck with the transition! L, The Pratt's

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