Maci usually sleeps until 9 or 9:30 every morning. Of course, she doesn't go to bed until 11:30 each night. Sunday night she went to bed and at about 7:20 yesterday morning she woke me up crying. It wasn't a hurt/painful cry but it was more than a wimpering cry. I got up to put her pacifier in her mouth and noticed she was wet and I thought she had just had an overflowing pee pee diaper. It turned out that the entire back of her pj's were wet....with FORMULA! I thought her extention tube (pic below) had just gotten disconnected as it has before but her button (pic below) was completely out! The balloon was ruptured.
This is the 3rd button in 2 months. It's very aggravating. One time it was replaced while the home health nurse was here so she just popped a new one in and voila! The next time, just happened to be after training on how to replace the button, and I popped another back in immediately and voila! NOT this time. Enough time had passed since the button came out that Maci's skin had started growing over her stoma (the hole) and I was NOT comfortable in trying to put in a new button. After the ER visit, I am glad I didn't try because they had to use the dialators (picture below) to enlarge the hole for the new button to fit into! The dialators are varying sizes on dual ends. They lubricate each end, starting small and insert into the hole, changing sizes to enlarge the hole until the button will fit. They gave Maci a pain med which helped. Of course she cried and screamed but I think it was more because she was being held down because as soon as the new button was in and she could be picked up she was calm.
Today, Maci does NOT feel well at all. I know it's her button area because any time you touch her button or tube for feedings she cries. Tylenol is helping but my heart just breaks for her. She has to go through ENOUGH and to have something "mechanically" go wrong and cause her more pain and another hurdle to jump, it's not fair.
So that is this weeks fiasco. I hope that I have nothing else "so exciting" to report any time soon.
Tube Extention
The top right portion fastens into the top of the button.
The left side is what the feeding pump tubing attaches to for feedings.
Mic-Key Button
The bubble/balloon part is inside Maci's belly and holds it in place.
This is the part that has been rupturing, allowing the button to come out.
Dialators
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