{ 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}.

Sunday, September 21, 2008

Sunday night

They turned down the oscillator to 20 tonight! So far, so good. Heart rate is in the 130's, blood pressure is staying steady in the 100's, and his oxygenation is still at 100%. Tomorrow morning(if all goes well) will be 19...tomorrow night switch to the vent!


He had a pretty stable day, and only a couple hiccups...this morning his blood pressure dropped for a minute so they turned up the dopamine again (they had just tried to turn it down). His doc said that was fine though...if he has to be on the dopamine until he's off the oscillator and the vent, its okay. She also said that the oscillator can make your blood pressure lower, so that maybe he's just ready to switch. 

Then later this evening his oxygenation fell below 94% for about a minute, but it went back up so it wasn't a concern. Still those things scared the heck out of me, I am so paranoid today. I do not like hearing that alarm!!! His fever went down this afternoon, so hopefully that will stay away for awhile.

Church was really nice today...the building is really neat, its an old one from the 50's with a balcony and a courtyard in the middle. I love those ones! We only stayed for sacrament, but next week, depending on how Gavin is doing, we will stay for all the classes. I am excited...its been awhile since we've been able to go to church together! The compassionate care person is already getting info for me for the playgroups and mini meets. 

We are still praying nonstop that his body will tolerate getting off this thing. They will be able to turn off the paralyzing meds when they switch him to the vent, so he will have periods of awake and awareness. I am so excited!

5 comments:

Melody B. said...

YES! Go Gavin GO!!!:P Prayer works....and we'll keep workin' with the prayers...you keep workin' on getting better. Thank you for fighting and continuing to push yourself towards getting healthy even though I know it's EXHAUSTING for you. All of your hard work will pay off in just a while buddy. WE LOVE LOVE YOU!!!!

Nicole said...

The power of prayer!!This is all good news!!

Tina said...

Great progress...Love to you today.

TheMoncurs said...

It's such a relief to hear that Gavin is doing better. We'll take every small step we can get!

Tara said...

Yeah, yeah, yeah! Keep up the fight little Gavin.