Our surgeon told us not to worry about the water level in Nolan's balloon.* I always thought that was strange, because other parents check theirs weekly, but I didn't worry about it since all was well.
About 3 weeks ago, his tube seemed rather wobbly, so I thought I'd check it. The balloon should be filled with 5ml of water, and I could only draw out 1ml of water. This is obviously not enough to keep the button secured, so I added 4ml of water and he was good to go.
About 3 days ago, it was loose again, and I added more water. I knew our time on the button was running short, because they are only really designed to last three months and his balloon obviously had a slow leak developing.
This morning, the top wouldn't close anymore and the internal valve was leaking a bit. I was on my way to a field trip for Matthew, so I really needed to get the tube changed. Thank goodness Dennis hadn't left for work yet, as no amount of talking would convince Nolan that this was No Big Deal.
I had the new button ready to go - I tested the balloon and it was great, and I opened up a packet of lubricant. I greased up the new tube, then we had to hold Nolan down for the actual change. I've never done this before, but there is no time for nervousness once you commit yourself to getting this done. I sucked the water out of the old tube, pulled it out, and plunked the new one in. I inflated the button with distilled water, and we released Nolan to have his Moment of Rage.
I am glad the new button went in so easily, though I hate the fact that we are holding him down for these things. It doesn't really hurt, but he has no control over what happens to him, and that is obviously extremely scary for a small child. We talk about these things, of course, but he has a great deal of PTSD from former procedures.
He went to school as normal and is bright and happy this evening - with a new, working tubie. Hopefully the next change will be easier, as he'll know what to expect!
*For those who don't have experience with gastrostomy tubes, many have a "balloon" that is filled with a small amount of water or saline - this acts as a bumper to keep the tube from falling out of place.
4 comments:
Oh Leah...
Hurray for Dr. Mom, doing what needs to be done, and doing it well!
And here's hoping that Nolan won't be so traumatized by the process next time - he knows you love him :D
Julie
You survived!! Yay! That is one thing I've never done in all our years of tubie-ness.
The feeling of holding them down is always worse. I remember my first tube change and he's only 2. Great job surviving!
The holding him down is really awful. Fortunately it was over fast and it doesn't really hurt - but it was scary for him because he didn't know what to expect. Nerve wracking for mommy, too!
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