{ 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}.

Tuesday, September 16, 2008

Gavin in PICU- asking for fasting & prayers

Gavin was moved to the PICU late Sunday night. He was having trouble breathing and coughing up blood. Since then its been a nightmare. He crashed so suddenly, its so scary...right now he is completely sedated and paralyzed and hooked up to a bazillion machines. I feel like its a house of cards right now, at any moment everything could just fall.

They had to switch him from a normal ventilator to an ocsillator yesterday, which is pretty much a "last resort" option. His body just couldn't keep his oxygen levels up on his own. They had to increase the rate from 25 to 28 during the night (they want it at 20 or lower before they can switch him back to the normal vent). He is bleeding in his lungs, his urine, and his stools. The ct scans are showing something in his lungs, but they don't know what yet (fluid, blood, or fungus) we have to wait for the cultures to come back. He also has fluid build-up in his abdomen. He is on so many meds I can't even explain them.

He had a rough night last night...his heart rate and blood pressure kept dropping. He starting running a fever early this morning, but it went down a bit with ice packs, and went under 100 later today. They've taken cultures from his lungs, throat, nose, stools, and urine but nothing has grown out of them yet.

They think he may have breathed in a certain fungus called Zygomycosis that eats away at the blood vessels, which would explain the bleeding in his lungs. It would have started in the lungs, and spread to his skin where that big scabby thing was through the bloodstream. Its a really rare one, of course. The ID doc here consulted one of the top pediatric fungal specialist in the US to get a second opinion on it, and they both seem to agree that, thats what it probably is. But they won't know anything for sure until the lung culture grows something. They are also going to keep an eye on the incision where the scab was to make sure they got it all out and it doesnt become re-infected.

His docs say he is doing better this morning than he was yesterday morning though. His chest scans from last night were improved from yesterday morning. They looked about the same today, but at least not worst. The bleeding in his lungs has lessened. But the bleeding in his urine has been increasing (but they are not as concerned with that right now). For now they are concentrating on figuring out what is in his lungs, what caused him to crash, and trying to lessen the amount of liquid in him. He is on two diuretics for the liquid, but they don't want to try and put a needle in to drain any more of it since he having problems with bleeding.

He is on two "super" antifungal antibiotics that are broad spectrum, meaning they cover a lot of different kinds of it. Usually it takes about 48 hours on them before they really start kicking in. So hopefully he will improve more by tomorrow morning. His doctors are sayin that right now he is stable, and they are seeing positive improvements. Its just going to be a "tight rope walk" the next few days as they try to adjust things...lowering the oscillator, while adjusting the meds, etc, since everything interacts and affects something else. Its going to be baby steps, but the doc is hopeful that he will be off the oscillator in 2-3 days. I'm guessing he won't be back on the transplant list for a couple of weeks at least, they have to figure out what this is first and clear it completely from his system first.

This is just all so terrifying. Last night I was so overwhelmed by fear I would forget to even breathe. The doctors and nurses were either in his room or sitting right outside the door all night. This is so much worse than the feeling of despair when the offers fell through.

We are asking our friends and family to join with us in a fast for him, starting tonight and ending tomorrow. Anyone who wants to join in is welcome...please send your prayers and/or positive, healing thoughts to him!

15 comments:

Marta said...

I´m praying for Gavin, I wish he will be ok. I have a 21 months old boy, PiZZ, and every day I wish and praye for my son and for Gavin to be strong and healthy. Be strong! He will be ok, he is a breave and special boy!

Brett and Meredith said...

Andre and Bethany....My eyes are welled with tears as I type this to you. Surely, your hearts are so far from your own minds and delved deeply into the soul of your sweet, baby boy at this time. There are so many of us that want to take this pain away from you so much. Know that we are praying for Gavin to have strength to heal his body and for you to have strength to heal your hearts.

Anonymous said...

Bethany, I am praying for you, for Andre, Gavin, Joenick, Evienne, the rest of your family, and the doctors and nurses taking care of your sweet baby. I know that Heavenly Father is aware of your needs and he will provide for you and comfort you as well, he loves you! I wish I could take your fear, worry, and heartache away. I am so sorry.

-Jenny Smith

Becky said...

We just got the email...I swear I was just on your blog a little bit ago. This is such a sad post and my heart aches for you guys!! I'm so sorry, I wish there was something I could do for you!!! Those pictures are so sad, it breaks my heart to see sweet Gavin like that. No mom should have to endure what you are going through. We'll be fasting tomorrow.

Janell said...

(((HUGS))) and PRAYERS for Gavin, you, your whole family. I'm praying that this is the dark before the dawn, and that he will pull through very soon. Please, please, please let him get better soon. No mother (or father, or family) should have to go through this.

Colby Kids said...

Many healing prayers for Gavin. I BELIEVE Gavin will be fine and that this is just a temporary bump in the road. He is close to my heart and in my thoughts.

TheMoncurs said...

Oh heavens guys. We're praying for you.

wyobuff said...

Bethany and Andre,
Grandma Sprague, Debbie and I are helping you with the fast. He is always in our daily and family prayers.

We love you

Fred and Debbie Newcomer

Beads Bee Boutique said...

Beth and Dre,
My heart is truly broken to hear this news. You are in every prayer. I am so sorry for your pain. We love you all so much.

Anonymous said...

God bless Gavin. He is in my thoughts and prayers. Sending you all strength and love.

Anonymous said...

My thoughts and prayers are with your baby Gavin, you and your family.

Jacona

Anonymous said...

(((BIG HUGS))) to you all. Your family is in my thoughts and prayers. I have been thinking about sweet little Gavin all day. I am so sorry~

Anonymous said...

(((BIG HUGS))) Bethany, Andre and family! You are all in my thoughts and prayers. I am so sorry about little Gavin. Love & God bless...

The Lindsey's said...

I'm so sorry to hear this. PLEASE call me if you need someone to talk to or someone to listen to you. Take a deep breath and know that this will pass. We love you guys and will be praying for you all. Let Heavenly Father help you be relaxed too. He'll bring you the peace you need right now.

Melody B. said...

Oh Beth...I'm so sorry you are having to feel any of this right now. We are praying night and day that Gavin can beat this. I'm with Janell, it's always darkest before the dawn...please let this be the case. I love you!