Tuesday, January 23rd
We just talked to the attending cardiologist. He said that there was something else that they found on the heart cath that was very concerning.
During the procedure, they measured the pressures in all of the heart's chambers. One of the atriums pressures was 22. Normal for him would be a pressure of 5-7. The biggest problem with that high of a pressure is they cannot do the 2nd stage (Glenn procedure) surgery to fix his hypoplastic left heart.
It appears that the only way they can fix his heart is to do a 2 ventricle repair, in addition to patching his narrowing right pulmonary artery. Originally this was best case scenario, but we always wanted the option of a Glenn in case his heart could not tolerate it. The cardiologist said that there are about 3 different ways to approach the repair, and it would be up to his surgeon, Dr. Bove on what to do.
They have Fedexed his pictures from the heart cath to Dr. Bove in Michigan, and now we are just waiting to hear what he says.
The attending said that Will would need surgery in the next 7-10 days. It will probably be Friday before we know any details. It takes a while to coordinate everything... insurance; getting Michigan to accept him; getting a bed space available; working him into the surgery schedule; scheduling lifeflight.
When we asked the attending what Will's chances were, he said, "Either he is going to make it or he's not. There's no way to know for sure. But, you have the best surgeon in the world, if not in the top five. If anybody can help him, Bove can."
We're so scared right now.
During the procedure, they measured the pressures in all of the heart's chambers. One of the atriums pressures was 22. Normal for him would be a pressure of 5-7. The biggest problem with that high of a pressure is they cannot do the 2nd stage (Glenn procedure) surgery to fix his hypoplastic left heart.
It appears that the only way they can fix his heart is to do a 2 ventricle repair, in addition to patching his narrowing right pulmonary artery. Originally this was best case scenario, but we always wanted the option of a Glenn in case his heart could not tolerate it. The cardiologist said that there are about 3 different ways to approach the repair, and it would be up to his surgeon, Dr. Bove on what to do.
They have Fedexed his pictures from the heart cath to Dr. Bove in Michigan, and now we are just waiting to hear what he says.
The attending said that Will would need surgery in the next 7-10 days. It will probably be Friday before we know any details. It takes a while to coordinate everything... insurance; getting Michigan to accept him; getting a bed space available; working him into the surgery schedule; scheduling lifeflight.
When we asked the attending what Will's chances were, he said, "Either he is going to make it or he's not. There's no way to know for sure. But, you have the best surgeon in the world, if not in the top five. If anybody can help him, Bove can."
We're so scared right now.
posted by Stephanie Burns @ 11:23 AM
19 Comments:
At 11:56 AM,
Anonymous said…
I know you are scared. my heart aches for you as a parent. God is in absolute control of every turn of events. Will is God's child, who He entrusted to you; hand Will over to Him thru these next several days and let it be well with your soul. We are checking on and praying for you each day.
At 12:09 PM,
Anonymous said…
Stephanie and Josh - I am praying for you and hoping that you are able to get Will here. I will keep checking and praying....
Love,
Nurse Sarah from Michigan
At 12:22 PM,
Anonymous said…
Rest in God's assurance that He is with you and Will. We are all scared, too...But I KNOW God hears us and we are praying for peace for you and Josh, wisdom for Dr. Bove, and healing and strength for sweet Will.
At 12:25 PM,
Anonymous said…
Hold tightly to your Faith and to each other.
We love you so much.
Love and prayers,
Big O Joe, Aunt Becky, Adam & Andrea
At 12:38 PM,
Anonymous said…
Steph & Josh - we are so sorry to hear what's happening. We hope that they can get Will up to UofM in the next couple of days so Bove can repair his heart. Our thoughts and prayers are with you! This is truly in God's hands and I have to believe that Will is going to pull through this. Although we understand what he's up against and just what that means. Please kiss Will for us and tell him that we love him and that he can do it. We are praying so hard for you and we're not going to stop until Will is better.
I hope you can find some level of comfort by trusting in God right now. I truly belive he has a plan for all of us. The unfortunate part is that we don't know what that plan is. Stay strong together! Will is counting on you!!!
We love you and feel just awful. We can't wait until Will is better!
Love, Cass & Lori
At 1:06 PM,
Anonymous said…
Dear Steph and Josh,
My name is Karen (I am Lori Lowrie's cousin from Portland, OR). Lori and Cass have been keeping us updated on Will's progress. We are thinking of you and pray for Will. Our prayers are with you all.
At 1:14 PM,
Anonymous said…
Continued prayers going out for the three of you. Stay strong.
Crystal Lowrie (Cass' sister)
At 1:17 PM,
Anonymous said…
My name is Jennifer Vercammen and my 16 month old has HLHS. He has had the norwood and hemi-fontan both done by Dr. Bove. HE IS WONDERFUL. I can promise you he will do everything he can to save your little boy. If you need to talk or have any questions about U of M please call me. It is like a second home to us now. (810) 794-0875
Keeping you in my prayers.
Jen
www.carepages.com
carepage name jacobsheart
At 1:18 PM,
Anonymous said…
Sending lots of Prayers from South Dakota - I hope and pray that Will stays strong and over comes all the he is facing. Little ones are amazing in their strength -- YOU CAN DO IT WILL!!!!!
At 1:22 PM,
Anonymous said…
God has been with Will every step of the way.
"Be strong and courageous. Don't be frightened by the size of the task ahead, the Lord my God is with you; He will not forsake you. He will see to it that everything is finished correctly."
1 Chron 28:20
I love you all!
At 1:29 PM,
Jay said…
"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." (Deut. 31:8)
Praying God's blessings on Will and His peace for you and Josh.
Uncle Jay
At 2:00 PM,
Anonymous said…
We learned about your son from another carepage. Our son had his surgeries at UM also and his name is Blake. Our other son is William. We LOVE your son's name. :) We are praying for you and for healing for your little Will. We have also been life flighted in an emergency situation back to Michigan so will be specifically praying for everything to go smoothly and for you to be there soon!
With many prayers from FL,
Angela Livesay
carepage: BCLivesay
At 2:23 PM,
Anonymous said…
Josh and Stephanie:
Please know that you all are in our whole family's thoughts and prayers...we walked the same road that you have and understand how difficult it is!!! What people have already said about Dr. Boeve is SO true! Will is in the best hands possible!
Remember, lean first and most importantly on God and then lean on eachother, Will needs you. Will has prooven to be a mighty strong little guy already,he is determined to beat this!!!
Stay strong!
At 3:01 PM,
Anonymous said…
I'm very sorry to hear about everything that little Will has went through and is going through. Just know that you have people all over the country in which you don't even know cheering him on!
xoxoxo
Melissa in Florida
At 3:13 PM,
Terri and Fam said…
Your family is in our prayers. We have witnessed Dr. Bove do some amazing things and pray that Will has this surgery, recovers fast, and skips the entire process of going back to your local hospital.
God Bless,
www.grabbfamily.com
Terri and family
Corbin HLHS 18 months
At 4:01 PM,
Anonymous said…
Stephanie & Josh,
We wish we could be nearby to hold
you both close & help with what ever your needs are. We know God
is the Great Healer and is holding
you all in His hands.
We pray Dr. Bove will be able to
correct his problems and he will be returned safely to your loving
care. We send love & hugs to all
of you and await anxiously to hear
your reports. Love & Prayers, Gina & Pops
At 4:01 PM,
Anonymous said…
Stephanie & Josh,
We wish we could be nearby to hold
you both close & help with what ever your needs are. We know God
is the Great Healer and is holding
you all in His hands.
We pray Dr. Bove will be able to
correct his problems and he will be returned safely to your loving
care. We send love & hugs to all
of you and await anxiously to hear
your reports. Love & Prayers, Gina & Pops
At 4:13 PM,
Anonymous said…
Many of us at St. B's have been holding you all up in prayer. Keep steadfast and strong in knowing, though His ways are mysterious to us at times, your Father loves you infinitely, and remember that He knew,loved, held, and had a plan for Will before He even made Will known to you.
At 6:29 PM,
Anonymous said…
I heard of little Will through Wyatt, and of Wyatt through Kellen Strauser's dad, who is my second cousin...and I just wanted you to know that we will be continuing to life him up in prayer here in Ft. Gratiot, MI. May God's richest blessings fall on these three little boys. Linda Aho
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