{ 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}.

Monday, May 12, 2008

Unexpected change of plans...

We arrived in Cali yesterday night so we could go to Andre's appointments today & tomorrow for his live donor work-up. Well, around noon today while Andre was getting blood drawn, Gavin woke up from his nap with a fever of 103.7!!! So needless to say, the transplant coordinator sent us to the Urgent Care (which was conveniently right down the hall) where they gave him some motrin, then we waited and waited and waited until they transferred us to the actual Children's Hospital around 6pm.

We're totally exhausted! They think he has an infection in his line, so we'll be sticking around here until this weekend (instead of driving home tomorrow night as planned). They drew blood and urine samples, so they'll watch them over the next few days to see if the "grow" anything (bacteria) and then they'll see which bugs he has and decide how aggressively they need to treat him. Right now they just have him on some standard IV antibiotics.

We were a bit freaked since this is the first time Gavin has been admitted for actually being "sick" but he's been doing okay so far. As long as we keep the Tylenol flowing, he is in a pretty good mood. I also got to meet one of the moms from the liver disease message board I frequent. I knew her daughter had been here the last week or so, and she found out we were admitted and stopped by to say 'hi' tonight! So that was cool...and they're here until Friday as well, so we'll get to chat more.

I have to eat my words though. I thought the hospital in AZ was a pain in the butt, but here we have to share rooms! And no cell phones allowed!! However, they do have wireless internet so I'll overlook that one. ;) We ARE very glad that if he was going to have an infection/extreme fever that it was right here where his entire transplant team is though!! He will get to see his transplant doctor everyday while we were are because this is her week for rounds! Lucky! (I guess?) :) We're also glad we decided to stay in the hotel across the street from UCLA this time, so we are very close by and can just walk back and forth from the hospital to our room to get whatever we need.

I'll update more when we find out what's going on.

2 comments:

Becky said...

We were worried about you today..being a little MIA! I hope everything goes well!! We're thinking of you guys...

Anonymous said...

hi. i'm zackery's mom. you met me and my husband 2-days after our son got his liver. 4-14-08, i think. i lost your contact information after transitioning from hospital room to hospital room, then to hotel to hotel. but i'm sure everything is going to work out for your family and i'll continue to have you and your family in my prayers.