It Happened…And We Survived

Every parent has a fear that they just don’t want to face. And every parent’s fears can be similar or drastically different and most of them change over time and with experience. Over the past year, Matt and my fears have morphed incredibly from the fear of birthing an unhealthy child, to fear of saying good-bye to fears of caring for a special needs child. Lately, one of my biggest fears is having to re-insert Jack’s Mic-key button if it were to be pulled or fall out. For this reason, Matt and I check the water in the balloon often to make sure that it is in securely and won’t fall out accidentally.

Cut to Wednesday night. Matt’s mom came over after she left work to watch Jack. Matt and I were getting ready to go to a movie that was sponsored by my company. Jack was laying on the floor, being set up for his 6pm bolus feed when Debbie arrived at our house. She set down her things and sat on the couch while Jack was being ‘suited up’. As soon as he was ready and his pump was turned on and running, she reached down to pick him up. In the same movement, her foot landed on Jack’s feeding tube and the button came out. It gracefully popped out of his abdomen and landed on the area rub between her and Matt. Now, just to be clear, this was a total accident and there is no blame pointed anywhere. This is just a milestone to share.

Of course the hysteria commenced immediately. Debbie and Matt were lamenting loudly, Jack was crying from fear of the obvious concern and I was not so calmly yelling at everyone else to calm down.  Thinking back at it at this point, it would have made a great sitcom scenario in which only families dealing with gastric feeding tubes would appreciate.

Once Jack was calm and a towel was placed over his belly, Debbie occupied Jack, Matt kept him from kicking around excessively and I rounded up the supplies. It was time to face our fears and insert Jack’s emergency Mic-key button. The water was drawn in the new syringe to inflate the  button after it is inserted and the button ‘stem’ was lubricated with a water based lubricant. The only thing left was to muster up the courage to insert the collapsed balloon into a gastric stoma the diameter of a coffee stirrer (the average coffee stirrer is 3 millimeters in diameter and a 12-french gastric tube is 4 milimeters…close enough).

But it’s done. I was able to insert the new button and fill the balloon with 5 milliliters of water. Matt, however had to finish cleaning and dressing the button site because my hands were shaking too bad to apply the powder.

Observe, the old button; balloon still filled to the recently-refilled 5 milliliters. Jack, you’re a trooper!


I hear that most gastric buttons find their way out of their stomas pretty often so I was pleasantly surprised to finally realize that Jack’s lasted a couple of days over 6 months.


6 thoughts on “It Happened…And We Survived

  1. Oooh my gosh!! Kaytee, what a trooper you three are. Wow! I would probably be screaming to Paul, and as he did to me one time before with one of the kids, he’d very reassuredly say ‘you broke it, you fix it.’ Which can be rather breathe taking!! Amazing, you are just amazing. Thank you for your clarity in details on the life you all live, we feel like we’re right near you all. Love your family!

    • I’m glad we can share our story and I’m happy to know that it is keeping us all together even though there is a physical distance. But I would never want our lives to be any different, if it were we may not have Jack. Things work out the way God intends and He wanted us to change Jack’s button. I’m good with that!

  2. Oh my gosh Kaytee I commend you all on your courage & strength. I am so sorry for you that you have to go through that. I do continue to pray for all of you. I am sure you never went out that night. Take good care. Did you find a new nurse yet?

    • Actually, now that it has happened, I don’t feel like it’s that big of a deal anymore and would have no problem putting in the next one. Experience really can abolish (some) fear. But thank you for the prayers. They NEVER go unused. We are still looking for a nurse but are starting to get a lot more interest so I think we will find one soon. Thank you!

      • I have so been there!
        the very first time we went to dinner and had my mother in law babysat. We just got our appetizer and i had to rush home and pop it back in. You are right, it’s not so scary after you out it Back in once and it sure beat a 6 hour trip to the ER or surgeons office!

  3. The first thing I said to Jack, who was calmly chewing on a plastic syringe, is”your Mom is amazing, and so are you! He just grinned! Matt and Kaytee made it to the movie on time. Jack and I “whooped it up!” Jumping, singing,reading, and eating books(Jack truly “devours” books) and just having a good ole time until he rolled over and went to sleep. I was frightened, but as always we made it through. Thank God– again!

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