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James

Posted Dec 02 2012 3:31pm
Yep, just lots of thoughts about our little man James.

James turned 6 in August and due to the timing of his well visits in previous years, we had his well visit with our pediatrician scheduled for early October.  Unfortunately that well visit turned in to a sick visit because he had strep, then pneumonia, ended up in the PICU for a week, and finally came home at the same time that two of his siblings ended up with pneumonia.  Thankfully he recovered quickly after that whole escapade and now he's doing great.

Just before the entire month of doom at our house, James had a minor surgery (you might remember, we had 5 procedures done in 2 days on the 3 little boys).  James received new tubes for his ears and he also had his g-tube "re"placed.  He'd had it from the time he was 2 until he was 5 1/2 years old and at that time he was eating SO WELL that we were able to have it removed!  YAY!

Then, the day after it was taken out, James decided to start refusing food again.  For 6 months we struggled with weight, eating, behavior escalating, the inability to get medication in to him without full restraint (and despite his small size, that little boy is STRONG AS AN OX!)...  and so the story went.

At our 6 month visit with the GI doctor he very candidly said "it's up to you, but if you were to say "what do you want to do?"  then I'd say let's just put the tube back in so he has it and it isn't so much of a fight every day."  And so we did.

Then he started eating.

After getting the g-tube put back in (which I will mention here was the easiest g-tube insertion ever because he didn't properly close after the previous tube and he was able to have it reinserted through the same opening as before... no pain, no issues at all!), he continued on the same diet of 40 ounces of soy based "total pediatric nutrition drink" a day.

Now we can get the full 40 ounces in him on a daily basis.  Most days he even drinks it all ORALLY.  He doesn't do well with a pump hooked up all day (he is a bit on the ACTIVE side), so it's great that he can get it in on his own!  Unfortunately, now that he's eating it all... we have another issue we've been dealing with the last couple of months.

He loses half of it back out of his g-tube!

Yes, it leaks OUT through the hole that was made for us to put food IN to.   Since we couldn't get in enough calories.  And now we can.  But they come back out!!

I imagine this would be an excellent tool for someone that wanted to lose weight but had a huge appetite.  They could eat all day long and just "let it back out" through their stomach.  Except, that for him it comes out AROUND his tube.  And it smells gross.  And it soaks his shirt.  And it soaks his pants.  And did I mention that it smells gross?

And so... unfortunately, James' weight gain still isn't taking back off like it should.  In fact, he's pretty much hanging out in that "maintaining" zone.

We go back to the GI doctor next month.  I'm pretty sure the plan will be to take the LONG (annoying) g-tube out and replace it with a Mic-key or a Mini button (hahaha... yes, they're really called that, two different brands of the same low-profile feeding button). We'll hope that a button will 'seal off' better and not allow half his feeds to come back out in a (smelly) mess all over his clothes!

In the mean time, we're also in the process of scheduling for a urology visit and a neurology visit.  He's old enough to say that he's not likely going to just outgrow the hyperactivity.  It's time to find out if there's any other underlying conditions to his extra energy, zero sleep, and other concerns that we've had over the past few years.

Our little wild man also just had his thyroid medication increased, so it must be his turn to get all the medical attention and figure things out for him! :)
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