Thursday, October 9, 2014

The Verdict

The verdict is in.

We met with the feeding team today and they unanimously agreed that it's in Abby's best interest to have a g-tube put back in.  There are a lot of reasons, but the big one is the stress on Abby to eat and gain weight.  She is consistently about 300 calories short of what she needs to be taking in daily.  Her goal is 1,300 calories a day because she burns so many calories breathing, and she didn't quite hit 1,000 in this last documentation...despite our best efforts!  With a tube, we will be able to address her feeding concerns without stressing that she has to get a certain amount of calories every day.


I made a few calls and was able to get it scheduled so that it could be done at the same time as the jaw surgery.  I was surprised at how uneventful that process was.  She will now have her ear tubes removed and replaced, her old gtube scar revised, a new gtube placed, and a jaw distraction done.

4 procedures, 4 doctors.

(The revision is done by a plastic surgeon, but the new placement is done by a general surgeon!  I don't understand it either.)

It's all scheduled.


Checked off the list.

So why do I feel like I failed Abby somehow?  Especially when I talked to her about how she would be getting a g-tube again and she said, "But I'm going to cry when I get it because I just don't want it!"

Did we work as hard as we could?

Is there another cup that might make it easier to drink?  (I have about 30 different types!)

Could a different medicine help her eat better?

Will this be a huge step back in her eating progress?

But we are committed to continuing to focus on the eating, and are surrounding ourselves with a team of doctors and nurses who have the same focus.  We are not giving up on Abby.

We will not give up on her.

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