{ Hello! }

My name is Gavin. I am 11 months old. I was born with a genetic disorder called Alpha-1 Antitrypsin Deficiency that caused my liver to go into failure. I was misdiagnosed for 3 months and underwent emergency surgery before they found out what was wrong. I am on the Organ Donation List and am waiting for my "gift of life" so I can have a liver transplant. You can read about my story by clicking {here}. Thank you for visiting my online journal!

*It is our deepest sorrow to inform you that Gavin passed away while waiting to receive a liver transplant. He was only 14 days away from his 1st birthday. Please, if you haven't already, sign up to be a registered organ donor today and talk to your loved ones about your wishes: http://www.donatelife.net/. Thank you all so much for your love and support during this last year.

{ This is my family }

{ This is my family }

{ A Mother's Plea }

If you only read one thing on this website, let it be {this}.

Saturday, June 14, 2008

Back to the drawing board...

We found out that Andre isn't going to be a viable live donor candidate. We're disappointed...even though they want to use a cadaver liver as their first choice anyway, we expected to have Andre as a back-up plan "just in case".

To be a live donor you have to go through whats jokingly referred to as "the million dollar physical" because they seriously run every single test that's out there on you. X-rays, ultrasounds, MRI, echo cardiograms, EKG, blood tests, urine tests, stool samples, psychological tests, and on and on. If you pass all those tests, then they look at your vein placement. For live donation they take the upper right quadrant of your liver, which is the little part that sticks out. However, the liver has TONS of veins and arteries connecting to it, and everyone's is different. If you have a vein supplying a large amount of blood to your liver, and its connected on that little right corner...you're a no-go, seeing that if they cut it off, parts of your liver would start dying because of the loss of blood supply. Not good.

It turns out that Andre has a vein like that, but its medium sized. So they said they would rather not use him unless it was a life or death situation. However, they warned us there would definitely be problems recovering, like with blood clotting. I'm not exactly sure what that means (I wasn't the one on the phone) but in any case, he's not a good back-up plan, so we're moving on to Plan C. Which is me.

I did not want to do this. Me + surgery = terrified. Not to mention the huge scar that would run from my clavicle to my belly button, then from one side of my waist to the other (like an upside-down Y). But if comes down to my baby's life, I'll be hopping on the operating table without a second thought. I guess at least then I wouldn't have to be waiting and worrying out in the lobby, right? :P

So we'll be going back to L.A. again this month and I'll do all the tests, and hopefully I'll be viable. I know that most likely its not going to come down to a live donor anyway, but its just comforting to know that there IS a back-up plan if we need it. And if the back-up plan needs to be me, so be it! (and really, how fortunate are we that all three of us are the same blood type in the first place?! Some families don't even have that...). There are quite a few moms who were live donors for their child on the liver disease message board I frequent, and they all survived and said its not so very bad. I think the hardest part would be that afterwards I'd be stuck up on the adult floor, while Gavin is on the pediatric floor, so I wouldn't be able to be right next to him 24/7 until I was discharged (they said they do try to wheel the parent down to the peds. floor asap after surgery, so I would be able to least see him for a little bit each day).

Who knows....maybe I won't even have a chance to do the testing, because he'll already have his new, perfect liver by then!!! Pray hard!!!

1 comment:

Melody B. said...

You'd wear that scar like a battle wound proudly...I know you too well!:)