Finally...HERE it is...
I have attempted to write on this blog more times than I care to count...thanks for ALL your patience!!!
Information......About OUR BIG team meeting & decisions that have been made!!!
Avery is almost 16 months old...Praise God...for whom ALL blessings flow!
Pay no attention to the date on the above picture...this was taken in Sept!
Avery and one of his biggest fans..Devynn!!
AVERY and AMY...ONE of our home nurses comes for visits...HE loves her..and she is wearing one of his favorite colors....
Mom and the BOSS...Singing...Amazing Grace!!!
We have appreciated ALL the prayers ....especially recently for us during our BIG team meeting and decision making time; we know you are really concerned and wondering how it ALL went....
First of all I want to mention, that Joe and have talked to the kids... Devynn, Tyler & Andrew(limited information for Andrew) about some of what's happening with their little brother, and what will be taking place tomorrow.
Below is some of the Questions and Answers regarding our team meeting and conversations following, along with the decisions that have been made.......
Because of Avery’s complex medical care….there is not really any right or wrong answers when making many of the decisions that Joe and I faced and will likely continue to face…..
Q-How is Avery functioning Neurologically wise; due to the impact of his Bi-lateral strokes & what does the medical team expect; in regards to development/progression ..ect
A- Avery's ability to respond to likes and dislikes is something he can do, however he is not able to build on prior experiences and will likely not be able to; basically we are Blessed to have a child who can smile and laugh when he does smile and laugh...Having him be able to learn and grasp new things is something they expect him NOT to be able to do; that tells us that HE will always be completely dependent on us for everything..(which is okay ...and we really already knew that) Over the last 3-6-and 9 months Avery's development has been going in the wrong direction---Avery's recent respiratory issues(recent--being the last 6 months)are basically caused by Avery's inability to control his secretions, which are caused by his low tone and poor muscle strength Avery's hypotonia(low tone, reduced muscle strength)is caused by a few different things.
*Brain damage---the area in the brain that controls your muscles ---is damaged
*Side effect from medication---is LOW tone, and often sedation (which in return will make someone’s tone low, if your muscles are relaxed from the medication)
*Complex Epilepsy---Uncontrolled seizures, also impact Avery's LOW muscle tone!
Q-How can we keep Avery safe--and protect his airway--
A-To say it plainly----we are NOT sure there is anything we can do for Avery that will ultimately protect his airway....NOR can we guarantee that there will be anything that makes his hospitalizations less, NOR can we say that it will make his life here on earth any longer than it will be...With that being said....
There were several doctors at this meeting, all shared their medical knowledge and medical experiences with us, the information shared and the discussions that were had....followed by allot of prayer is what helped Joe and I come to the decisions we did.
"Trust in the Lord with ALL your heart and lean not on your own understanding"
Due to the severity of Avery's brain damage; and having been able to watch Avery over this past year and seeing the grate affects these strokes have had on him, the doctors do not expect that Avery will have a long life…
Someone recently told me that …ALL of our lives …Have a beginning, middle and end!
“It’s what we do in the middle that counts” ...
~So here we are in the Middle!!! Making it count!!!~
Joe and I both can respect and appreciate the doctors and their medical knowledge, but we know that the doctors are not God…. And that "HE" ultimately is in control of and knows the length of Avery’s life….
Having the above information has helped in the decision making process...May I add the very difficult decision making process.
When making these decisions…our goal has been to look at quality of life and what that might mean for OUR family and for AVERY… ALL of our decisions were not taken lightly and had been prayed about.
“In God, whose word I praise, in God I have put my trust; I shall not be afraid. What can mere man do to me? “
OUR GOALS….
To have Avery safely at home as much as possible
To have Avery be interactive with his siblings, family & friends---
TO SEE Avery’s SMILING FACE
To have him less sedated than we have seen him
“The Lords people may suffer a lot, but he will always bring them safely through-Psalms 34:19 “
Friday morning Avery will be having surgery; this surgery will include three procedures.
- Fundoplication--- This can help with Avery’s reflux/secretions from below (in his stomach) and a way to also help protect his airway.
- Saliva Gland Clipping---This can help with Avery’s secretions from above (coming from his own mouth) and a way to help protect his airway.
- Implanted Port Catheter (Similar to the Broviac Central line he had shortly after he was born)—This will allow Avery to be accessed for labs, medications (when needed)
We have prayed that ANY decisions made, are guided by God and that they are ONES that
God has planned for Avery and OUR FAMILY....not ones that we would like to have for our family....***because what we want and what GOD plans may be two different things!!
Below is a portion of an e-mail Joe received shortly after we had made these decisions…
This e-mail is talking about the man who wrote the song “It is well with my soul”
During this time, God can begin to transform our reliance on physical things to things of the spirit. He wants us to learn to walk by faith, not by our senses, our feelings or our understanding. God wants to teach us how to detach ourselves from all physical, emotional and spiritual supports, so that we will be able to respond with "Not my will, but Thine.
“When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.”
Singing duet.....SINGING''IT IS WELL, IT IS WELL WITH MY SOUL WITH MY SOUL"
Okay maybe it wasn't that song that they were singing....but they take requests ...and would certainly sing this song!!
AS an FYI----Uncle Kevin always sings to Avery...and Avery LOVES to sing with Kevin ...It's a joyful noise!!
On a side note....Avery got his ...ohh I don't know 9-10th IV this morning and will be receiving Thrombate..in preparation for his surgery in the AM!!
BUSY day today...pack up our room....Sign consent forms and get the last minute details for tomorrow!
Also....We will be in the ICU after surgery,so if you want to visit it might be better when we are back on the floor....however,you can always call me to see if it is a good time.....
Avery will be intubeated(sp?) for 24 hours after surgery...so please pray the extubeation(sp?) goes well,as well as the surgeries themselves!
I celebrated my 37th Birthday-- HERE at the resort on Monday...my hubby got me a mini laptop..Thank you Honey..LOVE IT!!
Thank you to all who sent me Birthday wishes,prayers,cards and gifts.......It was very kind of you ALL!!
I have been truly blessed!!!
Thank you to my brother for my Birthday dinner and all that you have done:)
My kids all did something special for me...thank you Andrew Tyler,Devynn & Avery:)
On another side note.....I am working really hard at making good food choices/exercise and working to loose this weight that apparently seems to have made it's home nicely on my body...pray that I can continue on this path and be healthy....
"Our help is in the name of the Lord,who made heaven and earth---Psalm 124:8"
***It's A Walk by Faith....NOT by sight***
PS...more pictures to come soon.....
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