{ 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 afternoon

Gavin had another stable night. They moved the oscillator down to 24. And they've turned down some of his meds, his blood gas is good, his blood pressure has been stable, and he is about half the size he was yesterday- he looks so much better! His kindey function numbers went down by one point.

He did develop a fever during the night, and it has been up and down all day today, but the infectious disease doctor is not too concerned about it. He said its totally normal for him to spike fevers during the first couple of weeks while he is fighting this infection. With ice packs they have been able to keep his temp under 100 so that is good.

His heart rate has been a bit high today around the 140's, so they have been adjusting his pain medication and his paralyzing meds. He has been really sensitive to the paralyzing drugs, so they have to keep moving it up and down...one hour he will be "too out of it" and the next he'll be twitching his toes and fingers and moving his chest. That is not good b/c then he fights against the oscillator which wears him out.

They are hoping to have him weaned off the oscillator by Monday. Please pray that his body can handle it! They will try turning him down to 23 this evening, and down to 21 tomorrow. We just pray pray pray that he will tolerate it this time.

I bought some books from the gift shop to read to him, the Golden Book Classics like the Pokey Puppy and The Little Red Caboose. We are trying to encourage him and talk to him a lot.

He is still "deeply, deeply in the woods" according to his doctors, but he is making baby steps in the right direction today. Today is the first day he has had a positive move forward, so hopefully it will stick. Two nights ago they were bringing up end of life options. So this is a small tip toe away from that. Thankfully that drain seems to have put that off for at least another day.

So today we have a lot to be thankful for. It doesn't mean that he can't back track or that tomorrow he couldn't crash again. Its really scary to think of that. We are all still holding our breath that the fungus hasn't spread anywhere else to his body, and that he can remain stable throughout the weekend. We are praying to thank our Heavenly Father for more time, and for the generous blessings we have received. We pray that Gavin can continue to move forward and his body will be able to heal and fight this infection. He still has a very long way to go.

7 comments:

Margaça said...

God is with your lovely Gavin... And we are praying for Him to stay until Gavin needs.

Belive in Gavin, he is a Super- Kid! He will have a great life.

Becky said...

I'm so so so glad he's doing better, even just a little bit!! We've been thinking a lot about you guys!! I came across this quote today, I really like it & wanted to share it with you: 'There's always good to be found in everything that happens. It may be a while before it reveals itself.'

Jen said...

We are praying for your little man. Please know that a multitude of prayers are being sent Heaven bound for Gavin.

Virtual hugs,
Jen, mom of Grace & Meghan

Thomas Family said...

Bethany- This is Desiree Thomas (Martinez) My mom is Nancy Martinez. We grew up together but it has been a long time since I have seen you. Your family is beautiful. I have been following your story for quite some time after my mom first told me of your sweet Gavin. I have never posted but have just been reading your words along with all the comments. Sometimes I feel like I am in a movie while reading, I pray you will have a happy ending. I do not know the pain you have, being Gavins mother, I can only imagine but I do know pain - the pain as a sister and the only thing I can say to you is YOU ARE AMAZING. You are a wonderful mother and wife. Your Gavin is precious and I will never understand why things like this happen to sweet innocent children but I believe the Lord has a special plan for him as well as you and through prayer you will be comforted with whatever that may be. I pray Gavin will be healed and like you said, One day at a time. Enjoy every day with your special little boy and love up the other kids as often as you can. This must be so hard for them. Thank you for your blog and for having the courage and endurance to keep it updated. God Blesaa you and your family. Love you.

Desi

marie said...

It is so good to hear he is making a little progress. We are praying with all of our might that his body will be strong and his doctors will be inspired to help him. You are amazing to keep everyone updated. We love you guys!

Anonymous said...

We are praying for Gavin every night and each time we check your blog, which is several times a day!
Your strength is surely rubbing off on Gavin, he is being such a fighter.

Jason, Casey, and Hank (ZZ Alpha)

Tina said...

We are grateful for his continued improvements. So glad the ward is taking care of you. Love to you.
The Whitesides Sing to him some of those great primary songs. Music can be healing.