Tuesday, October 2, 2012

Tubie Changes...

Max has been on the move.

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He started in his yellow chair, and scooted himself out to his beanbag chair.  And I let him.  When you have a body like Max does, there are few things you can do on your own.  So, we pad his area, and let him go for it.  Sometimes, he flops over...but he's safe.  And we're always close by.

He got down from the beanbag, to the floor.
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Then turned in circles for about an hour.
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He does this in his "free time".  Outside of his therapies and school time, I just let him play.  I think of it as his running around time.  Recess.

Today, he had me running around.  Starting first thing this morning!

Being on continuous feeds through the night and day, he's been having a lot more diapers through the night...and a lot more leaks.  Even with the bed pads, I'm having to change him, his sheets, and clean him multiple times by morning.

This morning, it was a bit excessive.  I was on his third linen change, and about to give him another wipe-down bath, when George decided to help, as best he could.
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I let George and Max have their "bath time" and went to take the linens off Max's bed and get his soapy water ready for a real bath, since George had given him such a good primer bath.

When I came back into the living room, George had done a little too much cleaning of Max, by taking the tape off of his GJ button extension.  In doing so, he had twisted the already twisted GJ tube.  I had to call the hospital and talk with several nurses, until I got the right one, in the right clinic, who agreed it needed to be taken out, and I could do it at home.

I stayed on the phone with the surgery nurse while I took out the GJ tube, and replaced the G tube.

It was very quick, very clean, and Max never fussed once.  I have replaced the G tube button plenty of times in the past 4 years, but not this GJ button.  It was HUGE!  I didn't remember it being so large when they put it in him in the hospital.  I must have not been paying attention.  I don't especially like watching xrays...they kind of freak me out.  So, I think I was paying attention to Max while they were putting it in.

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(All of that was inside of him.  It went in through the stoma in his abdomen, then into the stomach and down into his small intestine.  It had become twisted up into his stomach.  No wonder he was so fussy on Friday night!)

This is the comparison, the long tube is the  GJ Tube...the small tube is the Gtube button.
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He's been much happier today, and a lot less gassy and fussy!  Now he's eating 24/7 into the Gtube, and we'll keep on with our schedule of getting him to bolus feeds, then back to his blended diet.

It's always exciting around here!

1 comment:

Lauren said...

You are truly Wonder Woman, Deana. While Max has his Batman birthdoween costume, you should be in superhero garb, too!