Avery Post- op---


Mom and her boy....he's a trooper!!!

24 hours post- op......

It has been a little more than 24 hours since Avery's surgery's have been completed....

I have a hard time writing updates in the current situation we are in...ALL day it has been so touch and go...



Avery ...while still intubeated....

• His night was not much different from my last post(Fri-Sat)
• He had High Heart rates during the night... about 1 - 1/2 hours when they were a little lower...but we have not seen that since(the little bit lower part)
  
• Expressing irritability at times(over night ...early morning)
• His temp was still elevated(he has a fever)
  
• He still had a few apnea episodes and remained on the ventilation machine
• Pain and sedation meds were still given
• Blood levels still low...they are still not ready to give a transfusion
  
• He has fluid in his lung(s)...they will monitor
• No more seizures over night(Fri-Sat)
  

Today....(Saturday)

• Thank You God....We were able to take him off the ventilation machine....but it has been touch and go ALL day

Taken during the day yesterday ...after extubeation...HE remains very pale and PUFFY!!

• He continues to get breathing supports of O2
  
• He has been having a hard time keeping his SAT'S UP ...ALL day....since extubeation
• Well.....I thought his heart rate was high last night....it was nothing last night and early this morning compared to the rest of today...his average HR was 168-190 today....
• No big clustering of seizures during the day
• He has clearly been in a lot of pain...we have been trying to balance pain meds and his respiratory status...if you give a large amount of pain meds,it can cause him to be a little more sedated,which then can cause him to not breath very well on his own...trying to find that balance
  
• Tonight his blood levels remain very low....

Avery's eyes open for the first time since surgery...about 8:00PM ish
Saturday night!


OUR first smile since surgery...he only had a couple,but we were glad to have them!!

• Seizures in the late evening had increased again....added seizure meds were given
• Avery needed suctioning several times through out the day
• Avery did not really rest very well at all today
• Blood pressures have been from one extreme to another ....very high to very lower....numerous reasons why this could be,they have been watching it
• Avery's new Port Catheter had started to be used Fri into Sat
• Avery got his catheter removed, and continues to put out a lot of fluid
  

40-42 hours post -op
Saturday /Sunday

FYI----

• Avery's baseline Heart rate is----90-120

• Avery's baseline Respiratory rate is ----20-36
  

• Avery rested slightly better over night(Sat-Sun)...better being he actually slept more than an hour.....
  
• Avery had another large seizure clustering that required added dose of seizure medication
• Avery stills is very junky and has been suctioned today
• Avery's temp is still increased...they have increased meds to address the fevers
• His Heart Rate remains high....Not in the 190's but still hanging in the 160's
• Respiratory rate is very high and has been through the night
• He has awoken several times with pain...and while awake has showed many signs of pain
  
• I have requested the pain team to come by
• He remains pale in coloring and in sill PUFFY from all the fluid
• Still having de-sats.....and breathing hard at .....this 10:00 hour on Sunday...SO I gotta go...time to suction!
  

This was actually taken this morning(Sunday)...moments ago!!

NOT much else to say at his point we will continue to address all the above things mentioned...

***Thanks for the continued prayers/support***

"The Lord Bless you and keep you,the Lord make his face to shine upon you and be gracious to you"

12:30 something AM update....

He has had a rather rough evening...with what appear to be a bit of PAIN.....
I'm not sure the pain meds are working the best...

• Avery's blood count is very low.....

• They are trying to identify where & if he is bleeding from somewhere....
  
  
• He may need a transfusion tonight.....or they may try to hold off a little
  
  
• He has had several apnea moments...where he kinda stops taking a breath,but the machine picks it up.....
  
  
• AS an FYI----that does not mean he is 100% dependent on the ventilation machine ...it just means he is having some moments where he forgets to breath....there could be several reasons for the apnea periods...they are addressing it
  
  
• They have upped the rate of the venting machine...to see how he does
  
  
• Heart Rate has been really high....again there could be many reasons for that....some being the things I mentioned above...bleeding,temp...ect....
  
  
• Temp very high
  
  

So basically....there is a lot going on...some could be ALL related to the surgery itself....and the intensity of what he went through.....

• He has needed to be suctioned;something that does not thrill him....but is needed....this is not the deep suctioning he usually gets.....but enough that he's not to happy...
  

At this point the surgeon wants to check levels again in a couple hours....and if he continues to show any other signs of bleeding they will intervene.....

SO I am so glad that sleep is overrated...ha ha ha

So all the is to do now is...

Trusting the Lord with all my heart and leaning not on my own understanding...


To:Andrew ,Tyler & Devynn...Avery thanks you for the hugs and kisses:)

Our little miracle boy!!!


Avery ...with daddy he is so glad to finally see him after ALL those hours!


Our little Boss...swollen around his mouth/face....which is expected!
He's a tough guy:)


Here's an update post- op....

• We saw Avery in a timely manner after his a arrival to the ICU....we immediately noticed he was seizing...

• Which surprised us all...he was then given an added dosage of seizure meds...

• Avery is very sedated ...as we would expect...he had a lot going on today!

• He is swollen,but that is also expected, in time this swelling will go down!
  

Praise God the surgery went well....

• NOW we are praying for him to have a restful & painless night; along with an uneventful extubeation(when they take the breathing tube out )

Give thanks to the Lord for he is good his love endures forever!





Sending (((BIG HUGS & KISSES )))
To: Andrew,Tyler and Devynn...From:Your Little Bro...Avery:)
Lots of love too....



While in the ICU....I'm not sure visitors are a great idea....just please call us first,so we can tell you if it's a good time! Thank you all...God Bless!

Last procedure is underway...

• The Saliva Gland Clipping/Reduction---The DR started this procedure and Avery is doing well!!
  
• We are hoping Avery's last surgery will be done about 5:00....
• He has not needed any blood products...so that's good news!
  
  
  
  Talk about a Long day....

"Cast your cares on the Lord and HE will sustain you--Psalm 55:22"

Update on first 2 procedures from the DR.....

• I guess it was actually difficult to get the Port Cath line in Avery...He tried 3 spots before be got one!

• Avery has a lot of scare tissue....and he has a strange anatomy in regards to line placements!

• His Port is accessed now..and I think they may be using it already(not real sure ...but from our conversation ...it's very possible)

• He agreed that Avery was a difficult stick...So needless to say I am glad we decide on the line!

• Avery had the Fundo done......which went fine.

• I guess in the end he is technically having 4 procedures....they had to move his G-tube sight and made a new sight and closed up the old one...the other sight was placed to high!

Avery is doing well.....he has not lost a lot of blood!

It's now about 2:40 and the 3rd/4th procedure is just about to get started....keep the prayers coming!!!

"Look to the Lord for he is good his steadfast love endures forever"

12:30 PM Avery Update....

Avery is doing well in surgery ....The DR is still working on the Fundo and he has about 1 more hour of this procedure!!!
The DR that has been doing the Port placement and the Fundo ...will come out to talk to Joe and I in a while....
So the third procedure won't be started for a while....

My soul finds rest in God alone....He is my rock and my Salvation;he is my fortress, I will never be shaken!Psalm 62:1-2

11:10 AM ....Update....Avery is still in the OR

Little info.....about this morning>>>>>

• We went down to pre-op at 6:30-6:45ish...Things moved rather smoothly down in pre-op!

• He went into surgery about 7:45 -7:50

• The anesthesia & intubeation went good....

• As of our 9:30 update-- they were still working on the Port Cath placement

• As of our 11:00 update-- they had just finished with the Port placement and that went in with no trouble...They had just started on the Fundo at 10:45....

Joe and I went for a walk....it was good to get some fresh air!!!

This is the day the Lord has made,let us rejoice and be glad in it!!!!

Avery is in the OR NOW......




Ready to go down to the OR....we got a few smiles....God Is Good!!


Mommy and the boy......starting the morning early!




Avery had a ok night...some seizure activity prior to going to the OR...I think he enjoyed being snuggled with daddy....He was a bit cranky this am...but we managed to get some smiles!!!!

These surgeries will be ALL day....please keep him and our family in your prayers!

The Lord is our strength.....

The Plan....

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!!!

YOU have been waiting so patiently :)



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.....

FUN...Picture POST...some taken tonight ...
some taken August/Sept/Oct!!!
Some of the dates are not accurate!!!



Everyone's wearing these...you gotta try it!!!!!!!

Almost Birthday buds...her's is the day before mine:)

Me and my bro....

Joe's Birthday bud.....I think he's a little older!!!

Gone fishing call me later......

Like my new DOOOO????

My Ty guy.....

My Birthday cake...Andrew's class and he made:)

Loven....




OUR boy with daddy....just moments ago!!!


My attempt at taking pictures of all of us!!



THE BOSS.....and his daddy....I wonder who is gonna watch who tonight!!!



Music with Joanna....this week!

The boss and his biggest smile...

Avery and MR elephant!

Here I am again attempting to take picture of us all...I call this the we have our EYE on you!!

Avery with his auntie Carrie....big smiles:)

It's good to have a friend to hold on to!!!

Andrew loves his littlest brother....

My birthday....US ALL together .....

And again ...with grandama...Uncle Ken was taking the picture:)

Devynn and her bro bro tonight before she went home....LOTS of love there!


Avery and his friends!

A kiss for you.....

2 of my boys...


Biggest smile for his mammal:)

More music....love music time!

Never enough love...never enough kisses!

BIG mouth big smiles....

2 of My boys...and MY man...on his birthday!

Grandma...loves her grandson!

My 2 youngest.....so cute!!!

Avery with one of our home nurses.....he loves to give Jodi big smiles!!!

Like father ...like son~!


More music again......you notice Avery loves music:)

Avery with one of his primary nurse at the hospital....HE just loves the nurses!

The boss....in his orange......

Kisses all around....

ALL my wonderful kids....

MY handsome brother....

The boss on a walk....look at that face!!!!!!!!!!!!!

2 of my favorite people....

Avery and one of his great nurses.....

Devynn and her little friend Eithene.....

He had a bath,was weighed and had Nebulizer treatments ALL while still asleep....

Alseep ...while being weighed...how cute!

Look at that face.....Gotta love it!!!!

On My hubby Joe's---(Dad's) 40th Birthday.....3 of his 4 kids!!!
Boy do they love their dad:)




My mom in law with her oldest Son....on his 40th Birthday!

OUT for a walk.....

A mad boy working on head/neck control.....with Rachel his PT!!

A happy boy......


Never DULL moments at our house or in our family!!!

The boss playing with one our our great home nurses Marie:)

Tracey.....OUR NP...Avery loves her:)

Jen speech therapist.....Avery enjoys her!!!

Shannon...ONE of our awesome nurses:)

Dr.Sapp.....ONE of our great attending DR's!




The girls on there day out to the ballet!!!


Praise GOD for WHOM all blessings flow......