Sunday, July 24, 2011

Went for a meet and greet with Raquel's Gtube surgeon.

When we started this ball in motion I was the one pushing it.  Today I found myself sitting along side Raquel and Gabi (day helper) listening to a nurse and surgeon instruct me on all the neccesary procedures I'll need to know - how to put it in and replace, what problems could come about in the first 8 weeks, maintenance issues etc etc was a little numbing.
I listened and watched, well I watched.
Plastic tubes and valves littered the table along with a picture of a sometime skin bulge that bubbles up from the lower layers of the skin.  An example of the bodies natural mechanisms to purge foreign objects.  Healthy cells I'm told, mostly just an irritation, ugly and itchy....

Then when the meeting started to wind down, Raquel jumped into freak out mode.  Likely overtired, but still managed a diaper change and lance a nice little blood blister on her gum. 
Felt like chaos for a few moments. 
Melt down.
Me and a little bit Raqu. 
Not Gabi. 

Ren is got some water works just now.
She's doing the diaper and looking at Raqu's perfect little tummy.
"We should take a picture of this beautiful bare tummy before we stick a plastic tube in it' she says.
"Yeah". was my response.
Lots of condolence she's getting from me right now.

I haven't even moved from my near horizontal position on the couch while writing this.
I'm freaked out too.  I know it's obviously for the best, but like winning the Recessive Dystrophic Epidermolysis Bullosa lottery, who would bet on a life where a parent decides to push an early decision to have a new stomach port attached.  The USB to health and nutrition. Especially when it's actually the only place on her body that's not seen a blister, ever......
Crazy life we live.

1 comment:

  1. my son is 4 months old and has had a g-tube since he was 2 weeks old. It's easier to care for than doing dressing changes:) we have some issues from time to time but nothing major. if you have any questions, feel free to email me