We have had a doozie of a time with our 3 month old son's MIC-KEY button! Just wondering if others have thoughts/solutions to these issues....
- It is larger and more rigid than the base of the silicone g-tube.
- He bangs it hundreds of times a day with his hand while playing and this has caused a big build up of granulation tissue that was not a problem with the g-tube/rubber disc + gauze.
- The connector tube is made of a more rigid material and is easily "levered" when cuddling/moving him such that the base of the button digs into his skin or granulation tissue, irritating it or even making it bleed a bit.
We can see how the button might be great for adults and older kids but so far it has not been as easy for our little guy, whereas he never showed discomfort with the soft, jellylike g-tube.
Thoughts?
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Infants and MIC-KEY buttons
- By shawntain
- Posted May 26, 2009 at 3:19 am · 4 replies
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4 replies
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- Newest first
- By sadenis
- Posted May 26, 2009 at 1:53 pm
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Our son, due to severe reflux, had a g-tube inserted and a fundoplication nissen when he was 2 1/2 mths old. At first, we had a sticky thing that held the rubber g-tube in place, but after 6 weeks, he got the Mic-key button. Four weeks of those 6 he was still in hospital to expand his stomach size and get his weight up since he had been on an NJ tube essentially since birth.
So once he could eat age-appropriate size meals, I think we were giving him 4 oz every three or four hours of my pumped breastmilk. The rate was very slow, probably going in over 30 minutes.
We have a Zevex Enteralite Infinity which I have been told is quieter than the Kangaroo. And we have had no problems with it at all - very portable, easy to understand.
During the day, we usually fed our son when he was small in the bassinette part of his pack 'n' play. He had tone issues and didn't sit up well enough to use a highchair until he was almost a year old. Even though the instructions say not to add anything between the little mattress and the bassinette fabric, we inclined the bassinette with a pillow or two. This kept his head elevated during a meal and for about 20 minutes afterwards too, for his reflux.
Does your son have reflux?
Eventually he should stop bothering the Mic-key button. When he gets a bit older, you can take a stuffed toy and give it a Mic-key button so he can feed his bear too.
I kept our son's g-tube site scrupulously clean. His doctor gave us a cream once for granulation, Triamcinolone 0.1% (brand name Kenalog 0.1%). You can also use a 50/50 solution of Peroxide and water. Use a syringe to put some around the site, let it sizzle a bit, and then syringe water all over to clean it up, and wipe dry.
We use a split gauze sponge under his mic-key button to prevent moisture from accumulating, which can cause fungus to grow. If the gauze is getting dirty or wet, you should probably change it morning and evening.
Make sure you are turning the mic-key button every day, to make a good track for the post. It is just like getting your ears pierced!
I hope some of this is helpful. I saw both your postings and have probably put answers to both in the one posting.
Sarah and Henry
- By shawntain
- Posted May 26, 2009 at 3:43 pm
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Thank you Sarah and Henry! That is nice to know that he should eventually stop bothering it. We do have his crib on an incline and he does have some reflux issues. He is getting 4 oz bolus feeds over 30 minutes and the Kangaroo pump is a bit noisy! Good suggestion to use syringes for cleaning, I had not heard that before. Have you found the connector tube to be unusually rigid? Ours is sort of like a wire after only one month's use and it moves the button all over the place. I will call Kimberly Clark and see if there is a silicone one available...
Many thanks again,
Shawntain
- By sadenis
- Posted May 26, 2009 at 8:48 pm
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Hello Shawntain,
It's funny you mention the connector tube being stiff after a month of use. When we had our son in for his first changing of the mic-key button, at the doctor's office, and to see how he was doing, she asked us if we had enough supplies like the extension tubes, and I said "you mean we get more than one?". It turns out our insurance covers roughly one a week, although we make it last for 10-14 days. I would definitely phone your medical supply place and see if your son's supplies like that are covered. There is nothing worse than the extension tube that is so stiff that it stays crimped after you unclamp the clamp and yes, it moves the mic-key button all over the place.
Make sure you get an extra mic-key button kit too so that if it comes out by accident, e.g., when the balloon inside fails, or if you just need to replace it because it is leaking.
Let me know if you have any more questions - I am more than happy to help because we had zero help like this when we first came home with our tube-dependent 3 1/2 mth old.
Sarah and Henry
- By limabean
- Posted June 9, 2009 at 12:01 am
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you should be able to get more then one extension tube a month. and if you like a more flexible extension tubing you can try using AMT mini one extensions. that is the only extension tube we use on my dd since she tried an amt mini one balloon button (very low profile, about 1/2 the height of hte mic-key) my daughter is now on gj feeds so we are back to a mickey (g j button) my dd never touched her button she is very protective of it though. w/ her extensions and pump running she always carries slack inher hands so i am no help but most kids out grow the need to tug on it i use cloth g tube pads *(that i make) for my daughter which i place under her tube she has not not had granulation tissue or an infectioin (besides yeast when we forget to put a pad on for a day) since i started using them instead of guaze. is there a lot of space between you lo and hte mickey? he might need a longer.shorter lenght tube. how new is the site. granulation is very common and normal up to a yr post op its the body's way of healing itself.
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