Wednesday, January 14th, 2009

Mid-morning today, Karen came by to work on feeding therapy. I sat in my high chair like a big girl. First we worked on me touching food on my tray, then moved on to touching my finger to my mouth with food on it and finally ending up with a little (very little) in my mouth. I will drink a little juice from my flexi-cup but when it comes to eating I want to eat my crackers by mouth - not mushed up on a spoon and not in a feeding bag. Unfortunately, I am not very experienced yet with chewing food so we have a ways to go before I can just be given a cracker and eat it all on my own. Karen was happy to see that I like playing with food and I don't mind different textures of food on my face or in my mouth so we are starting off a lot farther then a lot of kids she sees.

The afternoon and evening went well but when it came time for my bath, my Mommy noticed that my button seemed kind of loose. She decided not to worry about it but it came back to bite her soon enough. Mommy headed off to bed while Daddy got me settled in. I was playing with my sock monkey and rolling around and then Daddy noticed that all of a sudden I had my back to him and seemed to be hiding what I was doing. Daddy had a bad feeling and decided to check and sure enough, I was holding my MIC-key button in my hand with a big grin on my face. The button still had some water in the balloon so it hadn't completely popped but there was a slow leak and the balloon was small enough I could pull it out. Daddy grabbed me and came to find Mommy so we could put in the back up button we always try to have on hand. This is a problem, the stoma in my tummy can close very quickly and if it does it would require surgery to reopen. This is a classic ER visit reason for kids with g tubes - a closed stoma. Ironically, Mommy had expected to get my back up MIC-key button today but was surprised when it wasn't in my supply order. When she called the supply company they told her my GI hadn't faxed in the prescription yet. Mommy quickly left a message for the GI to hurry and get it in but since there was no MIC-key and it was after hours, my parents tried to put the Mini button they still had on hand. Surprise! Three times they tried to put the Mini in, it would not fit, even though it is technically the same size. However, when my parents tried to put the MIC-key back in, it went in without a problem, but with the hole in the balloon there was no way to keep it in. Mommy called the supply company and talked to the after hours pharmacist and explained the problem. Since I get a continuous feed at night, waiting until morning was not a good option because I would be losing close to half my daily volume of formula. They said they would send a driver back into the office to get a MIC-key and bring it back out. Meanwhile, my parents put the MIC-key button back in, taped it to my skin and put a bandage around my belly to secure it in place. For two hours my parents had to keep me entertained until the driver showed up. I ran around the house playing with the doggies. When that got old, my Mommy let me try out a peppermint sucker and I was a big fan! That kept me happy for quite awhile but once I started smacking my furry brothers with it, my parents had to take it away.

Around 11 pm, the button arrived and my parents put it in while Marianne watched (she's never put in a button before). Then I got a dose of Tylenol to help with soreness at the stoma site and off to sleep I went! My parents were exhausted too and were grateful a crisis had been averted.

Peyton Nicole Smith