In honor of Feeding tube awareness week, I thought I would answer the #1 question I always get asked. How does the mic-key stay in her belly? The mic-key has a "balloon" port. I use a syringe to fill the balloon with 6cc's of water. The water needs to be changed every two weeks. And, the mic-key every 3 months.
The balloon part is in her belly. It would be pretty hard to pull out, even though I have heard many children do!
Home care sends 6 cases of 24 cans once a month. Our insurance covers the cost. Which is very nice since before the tube was placed we were paying $150 a month buying it ourselves!! We chose vanilla since it has the least sugar. And, she has to have the one with fiber in it since she has a lot of constipation issues.
We feed her from 10pm to 8am. Ailyn has to be SOUND asleep or she will take out the tube and feed the bed. She gets 2 cans, 16 ounces. She has an "extension" tube that we insert into the mic-key (not the balloon port). Then we hook the bag to the extension. At first it was confusing how to work the monitor. We felt so nervous that we would do it wrong. But, now I can work it in the dark.
If Ailyn wiggles and rolls she gets wrapped up in the long tube. I always wake to find her tangled or the alarm will go off telling me so. There has been many many times that the tube comes out and the formula spills out slowly on the bed. Try waking up in a puddle of pediasure.... or if the extension is open...... her stomach contents. Not so fun! They don't tell you that part when you sign up for this ;)
Overall the feeding tube is easy to use. The care is low maintenance. Traveling with the tube is very easy. We choose to use the travel pack instead of the IV pole. We were feeding the bed too many times. The tube was easier to pull out with the IV pole being so high. So one day Daddy came up with the idea of using the travel bag. So far it's fixed the issue! GO Daddy!!
Check back tomorrow when I answer some more questions!
