Unfortunately, this measurement didn't hold at this positive level.
Baby William's ability to ventilate with his damaged left lung deteriorated throughout the day. The CHOP NICU team switched him to an oscillating ventilator, which (like standard ventilation) had positive initial reactions.
Like the above, this too failed to hold the gas measurements required to keep Baby Will in the "green zone."
We opted to have Dr. Adzick connect Baby Will to ECMO (external heart/lung bypass) which required surgical procedures. During the the two hour surgery, Dr. Adzick's experienced team found that William's arteries and veins could not sustain the ECMO catheters. William's arteries and veins are "plexiform", which means they are like thin branches on a tree and could not support a catheter.
This is a major set back for Will. We had no choice to reverse the ECMO surgery and try re-engaging with the Oscillating Ventilation.
The CHOP surgical team are trying to stabilize Baby Will by using a combination of drugs, steroids, ventilation settings, and minerals (such as Potassium.)
Heather, after major surgery from the c-section, is camped out with me, Michael, and Trisha at William's bedside while they continue to try to stabilize him.
Updates soon.
Posts
23 comments:
Heather and Matt,
I'm praying for you all. CDH babies are the toughest. Keep the faith and hang in there. Will can feel your love and strength!
Prayers and Lung Function Chants,
Jen Miller
I'm praying hard for Will and you guys! Keep fighting!
I am continuing to pray for you guys.
I am praying for all three of you. I think the Miller's said it best CDH babies are the toughest.
Amber Myers
Owain's mommy
LCH
We are praying for that precious boy right now!
Sending +++ thoughts and lung function chants to Baby Will (and telling everyone I know to do the same!)
Peace,
Libby Cohen
I think you have a lot of CDH mommies up late tonight praying for your family. Please add mine to the list. Fight Will, fight!
Thinking of you guys and William. I could tell by his first photos what a fighter he is. Fight William, Fight!
We are praying for Will and you.
Liz
Thanks for taking the time to update, as I'm sure you are exhausted.
Lifting all three of you up in prayer.
Tina West
Mom of Ella West, CDH survivor
(www.ellawest.com)
praying for you guys. thinking of you all
Keeping you all in my thoughts, prayers and LUNG FUNCTION chants and it is true CDH babies are the toughtest and the most amazing fighters. Focus on Will now - not the numbers...
Elizabeth
We are praying hard for Will to keep fighting! Can CHOP put Will on ECMO by cannulating into his heart? This procedure was used on my son at UofM, as he was not able to receive ECMO the conventional way.
Praying that Will is able to do well without ECMO.
Heather and Matt,
We are praying for y'all.
I like what Rosie said. Is that a possibility for Will?
Praying hard for that handsome little boy of yours!! CDH babies can do amazing things--keep fighting precious William.
Tracy Meats - WY State Rep. of Cherubs and mom to Ian (LCDH, born 4/3/04)
We're praying for you. Although we haven't started off on our ride yet, remember that all CDH families say this is a roller-coaster ride, so just concentrate on that beautiful little boy and know he's a fighter already!
Praying hard for Will... CDH babies are fighters.
Gina
Wyatt's Mom
dearest Heather & Matt, I'm thinking of you all right now and sending you lots and lots of energy. Thank you for the updates. You are all in my prayers. lots of love, fi
Dear Heather, Matt and Will,
I just wanted to let you know that I am thinking and praying for you all during this challenging time. Keep up the good fight.
Love,
David Duley
Still praying. Keep fighting Will!!!!
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