A new game plan

It's been three weeks since Bub's last appointment at DCH and he's gained another 8 ounces.  This was great news considering he's been tube-free for the past five days.  Tube-free!!!!!

But before you go jumping up and down and doing a happy dance, this wasn't by doctor's orders.  This was a decision we made on our own, for Bub, and for his overall health and well being. 

We knew the NG tube was just a temporary solution.  It's been two months and he's more than exceeded our expectations.  But it was time to give him a rest.  To not have him scream and cry every time we have to put it back in.  To allow him to breathe normally without something obstructing his airway.  To give the skin on his cheeks and face a chance to heal.  It was just time.

Those are a few of the reasons we did what we did.  But there's always a deal breaker.  A crossed line.  A breaking point.  And once that happens, there's no going back.  For me it was his breath.  It just didn't smell like it was supposed to.  Might not seem like a big deal, unless you're a mom and your instincts immediately tell you something's not right.  

The first thing I did was get online and look it up (always a dangerous endeavor).  There actually wasn't a whole lot of information, but one site said it could be from a stomach infection.  Now I know you can't trust half of what you read on the Internet, but still, this was enough to freak me out.

Despite being almost midnight on New Year's Eve, I quietly sneaked into his room.  And then I not so quietly yanked his tube out, followed by a great many kisses and silent apologies for everything he's been through.  He wasn't too happy about being woken up, but he more than made up for it the next day.  He was full of energy, breathing normally, swallowing things, wasn't rubbing his face.  You could just tell he didn't have anything holding him back.

We were able to spend quite a bit of time with Dr. T today.  I think she's really starting to understand who we are and what works for us as a family.  Not only did we get her endorsement to keep the tube out (for now), we also have a new game plan.  Come back in a week for another weight check.  If he maintains or gains weight, we get another week.  If he loses weight, we meet with the surgeon to talk about a G tube.

We always knew that surgery was the next plausible solution, so I guess you could say we were prepared for her to bring it up.  Even so, it left a huge pit in my stomach.  And because of that pit in my stomach, and because I have a need to make lists, and because it functions as a sort of coping mechanism, I'll be going home and writing down pages and pages of questions for the surgeon (if and when we ever need to meet with him).  I'll put the words "Questions for G Tube Surgeon" on the top of the first page, I'll probably even underline it, then I'll leave some space and on the far left I'll write a dash mark, a placeholder for my first of many questions.  Because that's the only way I know how to deal with all of this.  The only way I know of being able to balance my natural "prepare for the worse" response to a situation that is beyond my control, while appearing on the outside to have a cheerfully positive outlook.  Am I fooling anyone yet?

Current Weight: 22 lbs, 13 oz

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