{ 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}.

Saturday, September 20, 2008

Saturday night

Gavin is down to 23 on the oscillator. His blood pressure dipped to the 80's for awhile, but it finally stablized in the 90s. (they don't want it to go under 80) The infection is what makes it hard for him to keep his blood pressure up, so we are praying that the anti-fungals will continue to hammer away at the fungus. We keep telling him to think of little army guys killing all the bad fungus buggies.

They have his oxygenation level at 30% (which is really only like 2%, because there is normally 28% in the air anyway). When they took his lung sample today, they had to turn the oscillator off for a minute and none of his levels dropped, which was really good.

They also turned off one of the blood pressure meds, and took him off the continuous Lasix (diruetic) which will really help his kidneys relax a bit. His urine output has been stable today at around 3 mLs an hour (normal for his size would be 1-2 mLs). His fever went away this evening and seems to have gone into remission, for awhile anyway. His heart rate right now is in the 130s, a little high, but okay. They don't want it to go over the 150s.

This is so nerve wracking. I am so nervous and holding my breath that he will remain stable through these little changes. I am trying to figure out how to be happy that he is doing well right now, while remembering that he still has a lot left to work through, and showing my thanks for our blessings today, while still praying for him to get through the next challenge tomorrow. As they say a LOT around here..."its a balancing act."

The main goal right now is for this infection to clear so his blood pressure can stabilize, and he can be weaned off the oscillator. Secondary goal is for his kidney function to get better and his urine output to stay good.

This was Gavin last week, just 3 days before he went to the PICU. He had just learned how to wave when people say "hi" to him. I can't wait to see him awake and opening his eyes and smiling and waving again. He is turning 1 year old in 2 weeks (October 6th!)...I hope, hope and pray that he will be awake by then.


6 comments:

Staci said...

The video is too cute!! I can't believe that was just last week! We are praying that he will stabilize & his body will fight! We love you!

Peterson Fam said...

What a sweet litle video that completely pulls are you heart strings especially if I scroll down and see his little pictures from a couple of days ago when he was bandaged and tubed up (which I'm sure he looks like today). Thanks for all your updates. I check your blog all the time. I try not to bombard you with my comments, but know that I am here and I am thinking of you guys and praying for you...a silent reader who is always checking in (but no completely silent :)). I am so grateful to hear that Gavin is taking steps in the right direction, but my heart is still just aching for you guys. WHAT A JOURNEY! I'm thankful I could come along through your blogs and your inspiring words...even if his status isn't always uplifting, it still strengthens me and my family as we pray and exercise our faith for your family.

Anonymous said...

Bethany and Andre,


I have been keeping an eye on Gavin's page and have been thinking about him and your family lately. I was shocked and saddened tonight when I came on his webpage to learn that he has been really sick. We all know at Banner Desert that he is a fighter and will fight as hard as he can to get rid of this infection. He has done this before, remember when I was taking care of him before his broviac repair and he went to the PICU afterwards and was a stinker and was pulling out his tubes because he was awake. :) He has always been a fighter and has great family support and love to keep him going. You guys are doing an amazing job, don't ever forget how strong you are and how strong your love is for this little guy.

One a happier note, it was so great to see that clip of him waiving, of course the funniest part of that is that he is still sucking on his pacifier! :) I am praying for your family and know that I am thinking about you.

Danielle from Banner Children's Hospital.

Amber said...

That is an adorable video. I can't believe he is almost one! He is a sweet little boy.

Anonymous said...

Gavin is such an adorable, handsome little guy. That movie just made me smile through tears. I'm a new reader to Gavin's blog and you are all in my (and my family's) thoughts and prayers. Especially Gavin's Mommy and Daddy. God Bless you both for what you have been through and what is to come. Sending strength, faith and best wishes from Minnesota.

Melody B. said...

Thank you SO much for that video of Gavin! Oh, it made us smile. Kate was on my lap while I was watching it and she was smiling & saying, "hi baby Gavin!" Then I would say, "hey buddy!" and she would say, "hey buddy!"

Gavin you are the general...tell those army guys to keep fightin'!!!:P