Hannah still does not have a normal night schedule yet. It is getting better now that she is weaned off her sedations (as of a few days now), but she still wakes up around 2 am to 3 am every night and is awake for a couple of hours before one of us bring her into bed with us and try to get her back to sleep. Of course, one of us has to end up awake during that time. Needless to say, we are both pretty tired these days.
This morning, I was the one who kept Hannah from around 3 am to 5 am until she fell back to sleep. When she did, I put her back in her crib and hooked her back up to her overnight feeds which I had stopped while she was in bed with me.
She woke up again around 7:30 am, and Daddy picked her up and brought her into bed with us. She was thrashing around, and she apparently pulled out her Gtube connector that was connected to her feeds. No big deal, just messy.
About 30 minutes later, Daddy woke me up saying “her Gtube is gone!” Sure enough, there was just an empty hole in her stomach, and her Mic-Key button was no where in site. We were racing against the “you have just an hour or two before the hole starts closing up” and needing to go to the ER. We realized then that we never received our backup Mic-Key from our Home Health company. We both looked at each other again like, “ARE YOU FRIGGIN’ KIDDING ME?”
Daddy found the Mic-Key in the crib. It took a few tries to get it back into her stomach, and it broke my heart seeing that it was causing her pain as we were doing it. But he finally got it in. Fortunately, Daddy found the box from the smaller size Mic-Key that TCH had given us and was able to get the balloon inside the Mic-Key inflated again.
Feeds went well that morning. Then around 3:30 pm, our day nurse and I both noticed that Hannah’s Mic-Key was starting to hang out of her stomach, definitely seeming loose. We got the syringe to measure how much water was still in the balloon (Daddy had put in 5 mL earlier that morning), and she was down to less than 3 mL.
We had a leak.
Daddy grabbed the smaller-sized Mic-Key that we had, and at the suggestion of our GI doc’s nurse practitioner, we inserted that one and inflated it to 4 mL. Worked like a charm.
After checking out the old Mic-Key, there was definitely a leak in the balloon. Glad we caught it when we did. The thought of having to go back to the ER because we couldn’t get something in there and having the hole close up (requiring new surgery) just made us both ill. We so don’t want to have to go back to the ER unless absolutely necessary — and hopefully not for another year!
Our GI’s nurse practitioner made some more recommendations for backup Mic-Keys, and their office is going to put in an order for multiple back-up options (an extra Mic-Key and a PEG-type tube kit) for “when” this happens again (it turns out it is more common than we thought!).
Later in the evening, our home health company’s driver showed up with a backup Mic-Key of the right size. We are keeping it safe. Just in case Hannah decides she wants to pull out her Mic-Key again…
This is not Hannah in the video (obviously), but it gives you the idea of what a normal Mic-Key button change is like!
You have me chuckling over here. Not that its at all funny but the same dang thing happened to us. We of course did not have a back up at all and they could not get it back it. They told me at the ER that you can just stick a tube in there to hold it open in an emergency. And you are always going to see the same attending at SUnrise. Maybe there are two but I am pretty sure there is only one full time one. We need to get together soon!