Our Sad Little Boy
James went to have his PH Probe put in this morning. He was not allowed to be fed after midnight, but there was still a bounce in his step and it didn't bother him at all. The bounce left the second he was wrapped in the blanket to have the probe put in. No child likes being pinned down and confined, but his eyes said he knew quite well some sort of torture was ahead.
The probe goes in much like an NG Tube (the temporary feeding tube he used to have in his nose before he got his permanant G-tube), so I had not expected him to be too bothered by this thing stuck to his face, altho it has been 6 months since he had the NG tube. I was more concerned about how he was going to like the idea of having to carry the monitor with him. Well turns out he didn't like either ideas, and he didn't get over it as time passed either.
All day he just sat around, hardly moving his head, just his eyes. His eyes looked big and confused, and sometimes even had big tears in them, as if he wanted to cry but he was trying to be brave and hold it back. He seemed tired and listless. He didn't speak unless it was important, like teddy or ketchup. His nose didn't seem to like the thing either as it was constantly runny. We spent lots of time snuggling or trying to stimulate him to play and get going, but he never got himself going. He did try walk around a bit, but rather slowly, as if the pack was way to heavy. I weighed it and it only weighed a pound. So I finally gave in and gave him some extra Barney video time. He even went to bed tonight without a peep ... a rare thing around here as he likes to keep calling me to make sure I'm still around.
Tonight is one night that I actually hope he wakes up with a bit of a coughing fit ... poor guy ... but at least then we can get some sort of reading. Although, they say the test isn't totally accurate, and medication is a better way to confirm the diagnosis ... and it seems we've already done that. So I'm not really sure how much benefit the whole test will be.
We are scheduled for a Pre-Op appointment tomorrow morning but they said I could come back and have the probe taken out before hand, even though our appointment wasn't suppose to be until later. Guess I'll have to get my butt up a little earlier tomorrow because there is no way I'm going to sit through a couple hours for the Pre-Op with him looking so sad and being so clingy. Can't wait to have my happy, chipper little boy back!
3 comments:
Awwww, poor little buddy!! It just breaks my heart when your child know whats coming to them... Micah's already catching on and I know it's only going to get harder. I feel so bad for James! Hopefully you can have the probe taken out ASAP. Thanks for the update!
): That is one sad looking little guy! I wish I could give him a hug! Does the tube in his nose release something that he can feel? I think I would sit still and look worried, too, if something was trickling down my throat. Poor James! Hope all goes well in the next few days. Keeping you all in our prayers!
The tube does not actually release anything. It just has a probe at the end of it that measures the amount of acid that is in the esphogus. From what I read about the procedure it is likely just that he was uncomfortable.
It reminds me of the first NG Tube they put. They had placed it in the wrong position and he acted much the same way until a couple days later they did an x-ray and replaced it correctly. NG Tubes are knows to be "ripped" out by the patients because they are uncomfortable, we were fortunate that James accept them so well.
So it was probably that he was completely uncomfortable having this thing down his throat ... I know I would be. I just comforted myself the whole day by reminding myself that it was only for 1 day ... unfortunately I couldn't explain that to him.
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