{ 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}.

Friday, September 05, 2008

round two.

...and its another no go. Too big to split. But they are keeping him overnight (well, last night) b/c they want to give him a blood transfusion before we go home. I just hope we get out of here by tonight. I am just choosing to not think/feel about it. It seems to be working. oh well.

btw: I hate flying. I hate taxicab drivers. I hate sitting in the ER. I hate sleeping in the ICU.

I do like buying every breakfast food imaginable and scarfing it all down before passing out on the hotel bed after "sleeping" on an uncomfy ICU "chair/bed" all night!

4 comments:

Staci said...

I'm sorry Bethany. I've been waiting to hear an update & am sorry it wasn't right this time. We all continue praying for him and hope you don't have to go through the "What if's/Could it be's" much longer. Get some rest this weekend...

em said...

How is a liver "too big to split?" Is Gavin too small for the half they would give him?
Does this happen a lot in the transplant world? Lots of false alarms? I am so sorry. I can't even imagine...

{ Bethany } said...

Em- it is not unusual for a family to have a dry run or two before actual transplant. Not every family does though, I do know a few families that didnt have any at all, got it on the first shot. But I also know one family that had FIVE dry runs before actually getting it. That is pretty unusual, so I am hoping not to come near her "record".


They always have a couple "back-ups" called in, in case the organ doesn't work for one person, it might work for another and everyone has to be there and ready just in case b/c it is all so time sensitive. They call you as soon as they know there is a likely donor available, but before the doctors have actually been able to look at the organ "face to face." Sometimes what sounds good on paper, doesn't actually turn out to be so good in person, and a lot of the time they end up turning down the donor when they actually see it. Its just that IF they do accept it, you have to already be at the hospital ready to go b/c once the organ is out, it needs to go back in FAST. There wouldn't be enough time for families to get there and be prepped for surgery if they waited until that crucial moment to call you.

It has taken us about 6 hours to get to UCLA from the time they first call us, to packing the car, driving to the airport, going through security, getting on the next flight, taking a taxi to UCLA, getting admitted, etc. There's no way they could wait that long for us with an organ sitting in a bucket of ice!

It stinks, but this is the only way to do it.

Brett and Meredith said...

Sorry that you have to endure so many ups and downs. We have you in our prayers and hope that these experiences will prove to some day boost you up, even though today, they really, really STINK. Good luck to you guys and let us know if there is anything we can do...bring over those darling siblings anytime!