{ 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}.

Thursday, May 01, 2008

Central Line is goin' in!

Gavin, Evienne, and I spent 3 1/2 hours at the hospital yesterday- 1 for his 2nd round of Vit K shots, 2 for his appointment w/ the pediatric surgeon who will be putting his line in, and then 3 a surprise visit to the hemotologist (blood doctor), which took FOREVER to get in since it wasn't scheduled.

This afternoon we spent over an hour there waiting for his 3rd and final round of Vit K shots...he was SO cranky while we were there, but I can't really blame him since I felt the same way.

We're being admitted to the hospital tonight for Gavin's central line to be put in. He is going to get a bag of plasma tonight because his clotting numbers have been bad (the liver is what controls your blood clotting, so when the liver gets bad, your clotting gets bad- that is why he gets bloody noses so easily & always has dried blood in his nose!) They will draw some blood later tonight and see if his numbers look better- if so, surgery is scheduled for Friday morning at 9am. If not, they'll postpone surgery and give him another bag of plasma. The surgery takes about 45 minutes to an hour, and he only has to fast for 4 hours before (yay!). AND he only has to stay overnight after the surgery is done (before they were saying 3 days, so that is awesome!!!), either way we'll be home by Sunday!

I'm not too nervous about it...its a pretty standard procedure. I'm mostly just concerned about his bleeding. I don't exactly want him cut open when he can't clot his blood correctly!!! The central line is like an IV, it will go into his chest, up through a vein to his neck, and then down by his heart. We will put pure energy/nutrients into it at night with an IV bag, so it will totally bypass his stomach and everything and go straight into his bloodstream. It will also be nice because we won't have to give him any medicine by mouth anymore, we can just put it into his line...and they won't have to stick him anymore for blood draws, they can get it out of his line as well. The home health nurses will come to our house afterwards and helps us learn how to take care of it and check up on it, etc.

So anyway...one more step closer to the transplant, the more we have done before then, the better!

2 comments:

TheMoncurs said...

Yay! Go Gavin go!

Janell said...

Sending you positive thoughts and prayers. Reading this blog is really inspiring. Thanks for sharing it. I hope everything goes well on Friday and that Gavin will soon be packing on the pounds!