{ 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, September 22, 2008

Fast tonight

If you are able, we are asking our friends and family to fast and pray for Gavin starting tonight.

They re-did his catheter but so far there hasn't been any urine. He just got a big dose of the diruetic and they are hoping that will do something positive. If it doesn't, they are going to put him on dialysis tomorrow morning. Tonight is going to be a very long night. We could really use some peace and comfort during this time.

Its going to be tricky to put him on dialysis b/c he is still on the oscillator. Today while they took his lung culture (which they have to turn off the oscillator to do) he didn't drop any of his numbers...so the doctor is hoping that they will be able to switch him to the ventilator or hand pump it for at least a couple of hours so they can do the surgery. They won't be able to take him into the OR b/c of his condition, so they will try to do it in his room.

His white blood cell count keeps rising, leading them to believe that he either got another bacterial infection, possibly from his abdominal drain, or the fungus has spread. The infectious disease doctor said there aren't really any other options for the fungus, but they will add another antibiotic, Vancomiacin, in case it is a new bacterial infection. Nothing has grown out of any of the cultures though.

His blood pressure kept dropping into the 50's and they had to turn up the dopamine to 18 and turn up the epinephrine. They also gave him some calcium b/c that was low, probably b/c he didn't get his TPN last night since he wasn't urinating. It is stable again now and we pray it will stay that way.

We do have some positive things to be thankful for. At least this time his oxygenation has been stable, he hasn't needed to go much higher on the oscillator, and he is not so bogged down with fluid as before. These are little bits of hope we have to cling to, and we pray that they will make the difference while he fights through the next 24 hours.

We pray that the diruetic will help him tonight. We pray that he won't need the dialysis, but if he does, that he will get through the surgery. We pray that this new infection will be identified soon and that they will be able to treat it successfully. We pray that Gavin is given the neccesary time to fight this battle and stay here with his family who loves him so very much.

31 comments:

Staci said...

My heart is aching for you. I'm so sorry you are going through this. I wish I could do more...but fasting & prayers can definitely bring miracles & you have a LOT of people doing that right now!!! I hope you can find some comfort tonight & know how much we LOVE YOU!!!

Thomas Family said...

Hang in there Bethany, my thoughts and prayers are with you. I'll check for an update tomorrow. God Bless and be with you.

Melody B. said...

Remember he could be one of the ones! It COULD be your story to tell. As impossible as this may sound try to not let the fear choke you. It WILL suffocate you if you let it and it toys with faith taunting it to retreat...don't let it!:) He's stretching you (it's like cleaning the burns), it's to help...Let Him make it better. Breathe through it...it must hurt like none other. I keep praying for you to be able to catch your breathe as He stretches you, to sustain you. I will fast. I love you...and He loves you too. He is there beside you taking each step with you.

Becky said...

We're praying for you guys tonight!! I hope things get better. You sound much stronger and more positive than you did in your earlier post!! What is dialysis? I've heard of it before..but I'm not sure what it is exactly. (I'll google it).

Jen Fenstermaker said...

Hi Bethany, its your cousin Jen, although I don't know you and Andre well we have been looking at the blog almost everyday and praying for you and all of our/your family for comfort to be in your heart and homes, and that Gavin will continue to have improvements.
We had a similar experience as far as dialysis and ventillators are concerned with Adam's dad and it is always up in the air it seems. Until things really calm down just know that we are here for you. If you ever need anyone to talk to or watch your older kids just let me know, I work from home so I'm here constantly almost.
You are not alone, and I wish I was able to know you better, and hope we can get to know each other better.
God bless you and may Gavin's spirit help him through these trying times...he is such a trooper, I can't believe he's almost one, well Happy early Birthday, and many more years to come!!!-love, Jen

marie said...

We will be praying for Gavin, You, Andre and the team of Doctors there in CA. We love you!

Jen said...

We're praying so hard right now. C'mon Gavin! You can do it little man. We know you can.

Much hugs and love from the Alpha Girls, Grace and Meghan, plus their mom Jen

Anonymous said...

All the best to Gavin, you, and your family. Sending him lots of good vibes and extra hugs and kisses tonight.

Leeann said...

Our family is praying for you.

Anonymous said...

Almost a year ago my phone beeped and when I looked at the text message I had received it read...I'm a Tia! Corinne is one of my dearest friends, she has told me so many beautiful stories about Gavin and all the miracles that have taken place. I pray so hard every day where ever I am that Gavin will stay strong. I know the deep love that everyone has for this little boy. Take care and remember you have a lot of people hoping and praying for all of you.

Anonymous said...

Bethany,
May the Lord bless you with a peace that passes understanding. Praying for Gavin's full and complete recovery and healing. Blessings.

Anonymous said...

My heart is aching for you. I just got word from Deborah. Keeping you in our prayers.
xoxoxo

Sharon said...

We are constantly thinking of Gavin and your family and will continue to pray for all of you. Hang in there. We love you.
Sharon & James (and the rest of the Andersons)

Anonymous said...

Please know that there are prayers for Gavin from the other side of the world (Australia). I will light a candle for him tonight. My heart breaks for you. May God keep him in his healing hands.

Suburban mummy & Co said...

Hi I am a friend of Blair Colby I have been following Gavin's journey and I just want you to know I am praying for your little boy, and I hope his numbers get better and I pray he get's his gift of life so very soon.
with love
Nataliya from the UK

Candi said...

Hi, I'm Candi, and I found your blog from Blair and Xander's blog. I just wanted you to know that I'm praying so hard for your little Gavin. No child should have to endure what he's going through and what he's been through. I pray for his health and I pray for your strength. I pray that when this is all over he just looks at you smiles and you know that it was all worth it. I pray that God keeps His arms wrapped around you all during this difficult journey.

Unknown said...

To Gavin and his family,

You don't know me but I have friends with a liver family baby who sent me your link.

My prayers and thoughts are with Gavin and all of you during this time as are many others I am sure.

Stay strong!

Mary

Anonymous said...

Bethany and Andre,
I met you at the Alpha-1 Education Day in March and Jen Bauerenfiend has forwarded me your blog. Please know that the Alpha community is praying for little Gavin and all of his family. He is obviously a little fighter. I hope the fungus is controlled soon and Gavin progresses to liver transplant. God Bless! Cathey Horsak

Peterson Fam said...

Bethany & Andre-
Our hearts, thoughts, prayers, and every ounce of our spirits goes out to you and is mourning with you. I wish I had something grand to say to comfort you. All I can think are those dreaded despair filled questions of why, how and now what. BUT I know that the answers to those questions only come through the Lord. We love your little family so dearly. Gavin has really impacted our lives and made a BIG mark that will never be forgotten. And when life gets too easy and we forget how fragile it really can be, I have Gavin's blog and life journey that I can read to strengthen and help me. Thank you for allowing me to come along and go through all of this with you...I wish I could do more and help more...whatever your needs are right now. But I realize that time and space and the Lords arms are probably going to be the best medicine. AGAIN, we love you. WE LOVE GAVIN.

Jen said...

Still praying for a miracle!

C'mon Gavin!

Jen, mom of Grace & Meghan, ZZ Alphas

Anonymous said...

I just want your family to know my thoughts and prayers are with you all. Never know what to say when one passes, sorry just doesn't seem to be fit.

God speed lil Gavin. Watch over all of us.

Nanci D.

Tina said...

You are remembered in every prayer. Love to you today. The Whitesides

Lee said...

Bethany- I love you and am here for you. Please call as soon as you are up to it. Prayers and love from Lee and I.

Anonymous said...

prayers are with the whole family, Gavin is in out thoughts and hearts, for the very best possible outcome. Health and happiness ahead.

Lucetta, LF Mum to Angus and Maggie.

Meg said...

I found you link through the Newcomer's and I wanted to let you know that you family has been in my prayers. I'm so sorry to hear about your loss. He is a beautiful little boy that has touched so many lives. Thanks for sharing your journey with all of us. Because of you family I will always be a organ donor. Families are forever.

Anonymous said...

I followed this link from MUA. Nothing but love for little Gavin and you guys.

Alicia said...

You don't know me; I found out about you and your sweet family through your cousin Staci. I read about Gavin on her blog today, and please know that my thoughts and prayers are with you, Andre, and your children. I can't imagine what you're going through, but wish you peace and comfort as you face this most difficult time. I know that Gavin came to the best family possible, and he will be yours forever. :)

Steve and Kalli said...

Bethany, our thoughts and prayers are with you right now. Take care and know that you and your family are loved.

Natalie said...

WE LOVE YOU GUYS!
Natalie and Josh

Tina said...

We continue to pray for Gavin and you. Our immediate family is also joining with us. Love to you today. The Whitesides

Rachel said...

Sprague family,
Words can't even express what we'd like to say to you. We want you to know that many families here in Utah - from Provo to Elwood - have been praying for you and that you'll find all the comfort and peace that a loving Heavenly Father can give. Know that you will continue to be in our thoughts and prayers.
Love, The Jefferies and Mouritsen families