Tuesday, February 12, 2008

Day 9 in the PICU

Well, we've rounded the corner with the influenza, and the sepsis has cleared up nicely, thank God. On Friday, things were at their worst. Ava was collecting fluid all over her body, and was almost twice her size. I was home extremely ill with the flu and her a.m. x-ray showed a "shadow" around her heart, which prompted a visit from the cardiologist and an echo cardiogram (which turned out fine). She also got a visit from her friend Ms. Millie who prayed for her that day, and really helped to turn things around.

Yesterday morning they attempted to extubate Ava (remove her breathing tube) and her esophagus became irritated and enlarged, so it just wasn't going to work. Her left lung collapsed, and she was re-intubated. This was extremely hard for Matt to see.

The attending later told me that when she saw Matt sobbing over Ava after it was over, that it absolutely broke her heart (and she definitely didn't seem like a tender hearted woman *LOL*)

Matt had been stuck in the hospital for four days straight, so I came right away (my 5 days of being contagious were finally up!!)

Soooo....I'm sitting here in awe of so many things.....

The Power of God

My precious baby girl. Her strength and endurance never cease to amaze me. I've never been more proud of her.

My husband ....for staying strong during the worst of this storm (and trying to lie to me about her condition *LOL*, when he knew I was calling the doctors at all hours.

Millie Bonilla for flying in from Florida to pray for and lift up our daughter.

The outpouring of prayer, love and generosity by so many people that I can never repay.

Our wonderful neurologist, for being more than a doctor, but a friend and a confidant. We love you Dr. G.

My family and friends for taking my frantic phone calls and for praying and
crying with me.

We still have a lot of recovery ahead, and the next few days are going to be hard for Ava, so please continue to keep her in your prayers.

Thank you everyone. No words can express all the gratitude we feel toward each and every person who has been there for us, in person, in prayer, and in thought.


gabandrewsnana said...

Sweet Ava, what a privledge it was to be able to pray, read the Bible and sing to you. Though I don't think you really cared for my singing, cause as I sang, " Yes Jesus loves Ava, yes Jesus love Ava, yes Jesus loves Ava, the Bible tells me so", your little arm was moving, almost as to tell me, "please stop the singing" but no I continued, smile. I then sang "You are the Lord my Healer", I think I messed up the words, cause I almost always do, but believe me when I tell you, it came from the heart!
You are so precious to us and I can't wait when you are older, telling others about Ms. Millie's awful singing voice, smile. I will be right there in agreement! You have wonderful parents that love you very much and are alot stronger than you will ever know. Believe in His promises: Bless the LORD, O my soul, And all that is within me, bless His holy name. Bless the LORD, O my soul, And forget none of His benefits; Who pardons all your iniquities, Who heals all your diseases; Who redeems your life from the pit, Who crowns you with lovingkindness and compassion; Who satisfies your years with good things, So that your youth is renewed like the eagle. Being fully assured that what God had promised, He was able also to perform.
So my dear Ava, even if you don't remember my face, I am sure you will always remember my voice,smile, and it is saying to you right now, Ava be strong and remember you are loved by many!I love you!From Ms Millie!

labonte4 said...

Well you really got me with that one Mill's. A real tear jerker.

Anonymous said...

Thank you so much for sharing Ava with us. I've heard alot from my daughter, but seeing the pictures and the comments makes it much more personal. YOu and your family have been on my heart since I first heard about Ava. She is so precious.
Thank you, too because you have been an encouragement to my daughter.

Trevor's Grams

About Ava

Ava Simone LaBonte was born December 1, 2005, a healthy baby. She was a happy, healthy, normal baby until six months old, when we noticed some odd movements, which we thought were exagerated startles. Ava had her first EEG at 6 months, and it was normal. Six weeks following the EEG, Ava began having head drops....and we knew this time, something would show up.

At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".

On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.

So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.