Wednesday, October 1, 2014


You know how when you really don't want to face something (like writing a paper, or doing laundry, or having an uncomfortable conversation), you do everything but that to try to avoid it?


I've pretty much only been posting surface-level, reviews of books, etc.  That's because I don't want to blog about what's really on my mind.  Avoiding writing about it helps me pretend it's not happening.

(Truth:  I just totally avoided writing this post for another hour by talking on the phone....)

Ok.  Time to just spill it.

Abby's most likely going to get another g-tube.  We will find out for sure next week when we meet with the feeding team, but our feeding therapist is recommending a g-tube.

There are a couple of reasons for this.  First, the jaw surgery is going to make it next to impossible for her to eat by mouth for a while.  We know she's going to have to have an NG tube (through her nose) for a while no matter what.  Second, Abby lost 2 pounds after the last surgery and has only gained back one...despite working SO hard!  If we keep this trend up, she will lose way too much weight and it will cause problems with her VEPTR surgeries.  Third, whenever Abby gets sick, she stops eating/drinking.  For weeks.  It's the first thing she loses and the last thing she gets back.  This has caused dehydration issues in the past because she often won't even drink water.

Matt and I have talked a lot about this over the last few days, and we've decided that if our GI recommends the g-tube, we will do it.  We will only use it as a safety net.  She'll use it post-op until her jaw feels better, but we'll also attempt foods by mouth, keep a regular "meal" schedule even if she doesn't really eat much, and keep working on the chewy tube.  While we may use it for hydration when she's sick, we're still going to attempt foods by mouth.  Most of the time, it won't be used.  The tube will just sit there, ready to catch Abby if she starts to fall.

While we are obviously disappointed and disheartened by this decision, we also feel a sense of relief in knowing that we will be able to maintain her weight.  That is a huge, constant concern for us because of the VEPTR.

We've started talking to the kids about it.  It was heartbreaking to hear Abby cry when we told her she might have to get another tubie, and Caleb keeps lamenting that it feels like we're going backwards (tell me about it!).

So...we'd appreciate your prayers this next week as we meet with our team.  It's not an easy decision to make.

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