{ 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, May 16, 2008

Friday update

We found out Gavin's infection is something called Streptococcus. Which is mainly found in the mouth...which means, most likely, our little man stuck the end of his broviac in his mouth at some point! That little stinker!!! All this mess for something so small. So now we just wait some more while they figure out the right combo of antibiotics to give him. They'll draw blood everyday and make little changes to the meds until they feel like its right. Its important to make sure they treat it right because it can lead to Endocarditis, inflamtion of the heart, so they're keeping a close eye on that, too.

So now the expected discharge date is TUESDAY! I am dying!!! But I guess we gotta do, what we gotta do. Andre is getting some more of his live donor testing done, too, since we're here. He's going to get an EKG, a HIDA scan, and some various other things.

Last night we couldn't find a hotel nearby that had any occupancies, so we ended up having to both sleep in the hospital room. That meant I "slept" on the top half of the pullout recliner chair, and Andre "slept" on the bottom half. Its smaller than a twin size mattress. Ya, we didn't "sleep" much, needless to say. We're both pretty tired today. But THANKFULLY we found a vacancy at the Guest House which is right on the UCLA campus! I called this morning just to see if they had had any cancellations, and the guy put me on hold, then said "You're very lucky! This person on the other line just cancelled!" So I snapped up 5 nights just in case we end up needing to stay longer than Tuesday. I'm VERY HAPPY because it is a GREAT price (for the LA area anyway)and they have very nice rooms. Everything else in the area was over $100 for Motel 8 type rooms, plus having to pay for daily parking...not cool.

We did get to go out Wednesday night, as Andre's uncle Doug & Aunt Marie stopped by. They took us out to Westwood Village and we ate some sushi! It was really good, and really nice to get out for an hour. They're so fun to hang out with, too!

And we also went to a liver transplant support group here at the hospital. Basically they just rounded up all of us that were on the floor and we talked for an hour. It was pretty funny...two of the moms only spoke Spanish, two only spoke English, and one could speak both so she translated the whole time!! Ha! But even with the language barrier we managed to find lots of common grounds and it was nice to know that they all had similar experiences and feelings.

So ya...give us a call anytime, we're pretty much bored most of the time, just sitting around in the room! I'll try to upload some pictures tonight!

2 comments:

TheMoncurs said...

Streptococcus..isn't that what causes strep throat? Glad they figured out what was wrong! I keep thinking I should stop by your house and say hi but then I remember that you're partying it up (ha) in LA. We should have a play date when you get back. Not like Wes is aware enough to really play, but you and I are!

{ Bethany } said...

Hmm, Im not sure, but I dont *think* so. I think its just sounds the same...but I could be wrong. I am SO ready for a movie day!!!! :D