Monday, October 1, 2012

The hardest decision of my life this far...

where to start...
 
Well, the GJ failed.
Completely.
We tried EVERYTHING
to make it work.
 
When the Drs ran out of ideas,
I told them a few things I thought they should try
 
We tried them all.
Nothing worked,

She isn't even tolerating pedialyte through the GJ now,
We had to stop using it COMPLETELY
She is only on TPN right now
(TPN is IV nutrition and only to be used as a last resort)

So remember that post back in August about how this GJ HAD to work?
 Well since it didn't work
We are faced with a choice
either Long term TPN at home
or
try going back to G tube feeds and trach her.

With Long term TPN:
Her port will be accessed 24/7
It almost guarantees a line infection,
(a line infection is extremely serious and often deadly)
most peoples gallbladders are shot in 14 weeks,
and they have liver failure within 1-4 years.
A person cannot live without a liver...
But with TPN she would get the necessary nutrition to survive and
probably wouldn't
need a trach,
or so we thought...

With a Trach:
she will have a tube sticking out of her throat,
She wont be able to speak unless she gets a special speaking valve
and there is NO guarantee that the speaking valve will work
and she wont qualify for one for the first month or so...
(so we wont hear her precious voice or cry or laugh at all)
She will be at a higher risk for lung infections.
She could have damage to her wind pipe.
She will have A LOT more medical equipment that goes everywhere with us
But with a trach
when her airway collapses
she wouldn't turn blue and pass out she could still breathe
She might be able to start eating food orally again
and we could get the GJ tube OUT of her and try to go back to a G.
She shouldn't develop brain damage from lack of air
She should be able to Fly again and go see the out of state Drs she needs to see...

With the two options we have We feel the OBVIOUS choice is the Trach.
Its really kinda sad when going with a trach is the option that will give the best quality of life

So after much prayer and research.
Lily is getting a Trach.
We meet with the surgeons tomorrow.

Then last night almost as if it was ANOTHER confirmation that we were doing the right thing
She had THREE spells.
Her airway collapsed,
She was trying to breath but couldn't
She didn't pass out
but  alarms were going off and her mouth was blue.
The thing was she was on TPN when they happened.
So OBVIOUSLY keeping her stomach empty wasn't going to stop these events
No these events weren't as bad as the others
 but they were bad enough.

I will update more as I learn more.
But I am sad to say my baby girl is getting a trach.
:'(

1 comment:

  1. That's such a heartbreaking decision that has to be made. Lily is in my prayers, and I hope the surgery goes well. I really hope she is able to use the voice valve, I always enjoy hearing her in church.

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