Things did not go well last night after Jay's surgery. He was doing much better when I left around 10, but a few hours later, his heart began to fail. I can't even believe I'm writing these words.
They did CPR on him for over an hour, and then did a surgical procedure in the ICU to put him on ECMO, which is a heart-lung bypass machine. ECMO was described to me as "crutches" for your heart - it does the work of pumping blood through the body so that the heart can heal. His heart is beating again on its own, but it is not strong enough to pump blood through his body. They hope to begin weaning him from it in a few days, but they have told us to focus on what happens in the next hours, not days.
He's now in the cath lab where they are creating a small hole between the upper chambers of his heart. That will take additional pressure off the left ventricle which is currently so weak.
He's on major blood thinners, so bleeding is a significant risk - from the tubes and lines for IV, cath insertion, and ECMO canulas, but also a major risk of bleeding in the brain (stroke).
Derek was with him when he went into cardiac arrest, and he called me to come to the hospital immediately. The entire cardiac staff was around his bedside - I've never been through an experience more terrifying or heartbreaking. We were able to be with him for part of the night between the many procedures and tests. He is heavily sedated and I'm told he will not remember any of what happened. We talked to him and sang to him, praying our voices would bring him some comfort. One of the docs even let him take his cow lovey to the cath lab.
Please pray for him. Please pray for us. We are scared beyond words.
53 comments:
Jen and Derek,
I had not looked at your blog yet this morning until Vickie did and alerted me to the long night you'd had. Please know that the hearts and prayers of the entire OSFA are with you all. Hang in there!
Julie
I can't even imagine what the past 24 hours have been like for you and Derek. But I do know that there A LOT of people who love you all and are praying for you. If we could, we'd all wrap you in hugs right about now.
Jen -- Tears are flowing as I read this latest update. My heart absolutely breaks for yours. As someone who has stood in your shoes, I will be more than happy to be the ear you can cuss, scream, yell, and cry into. Please don't hesitate to contact me once you feel you're at a place, physically & emotionally, to do so.
Praying hard for you, Derek, and precious little Jay. I hate this for him, and for you.
Jen and Family -
my heart hurts for you right now. as a mom who has gone through this and experienced the mass of doctors huddled around your child I understand what you are feeling. Please feel free to call me (608)630-3104 if you need anything or just to talk to someone who has been through it. Please know that with you Jay is strong and you are in a very wonderful place with great doctors and reputable history. Keep talking to Jay and letting him know that he has so many people that love him and cheering for him.
I am so sorry that you are going through this.
Amanda
He is in the Lord's hands. Nothing has caught the Lord off guard. My prayers for your strength through this.
Beth called us about 6 am and talked to Dennis. We prayed together right then and there, but I didn't get the whole story until now (at work reading your blog and now my eyes are all red and make-up is smeared). So I am thankful for your blog as I don't always get all the information. I saw Myra Brinkman and she asked first thing how Jay was doing.
Jen, its been a long time since we've been in touch but please know you and Jay and Derek and the little one (I didn't know about) are in my prayers. God is your strength at this time and the rest of us will hold you up in our prayers. Only God's best for you and your family.
May God give you peace that passes all understanding. Little Jay, you, Derek and Luke, as well as the rest of your family, are all in my prayers. Your family is being prayed for by many strong believers, so know you are not alone.
Much love and many hugs,
Ashley B.
Undergraduate Admissions
Jen, please know that your FBC family is praying for all of you as well as the medical staff. We hope you can feel the prayers and love supporting you all.
Libby Barnes
Jen-- I am praying hard for healing for Jay, divine guidance for the doctors and strength for you and Derek...
Derek & Jen,I am so sorry to hear about the heartache and fear you are going through. I know you know this, but there are so many people praying for your little guy. Hang in there. Give Jane a hug for me. I love you all!
We're praying even harder than we were before.
Lots of prayers and hugs your way. I'm thinking about you guys a lot!
We are praying for you and your family here at the UCO.
Andrea
Jen and Derek,
I have not stopped thinking about you since I got the prayer request email this morning. I am praying that sweet Jay can heal quickly and that the worst of this is over.
Hugs, prayers and peace-
Sarah Gilbert (FBC Formations Class)
I'm praying continuously for Jay and all of his family. There are people being added to pray for you every minute.
We are praying for Jay and your entire family. We like that kid so much. We are praying that his heart can recover quickly. Prayers for the wisdom of doctors, strength to you and Jay and most of all healing.
Sean and Cindy Toomey
My deepest prayers to you Jen and Family.
I pray: Lord watch with Jen and Derek over your child Jay and grant that he may be restored to perfect health. Relieve his pain, guard him from all danger, restore to him your gifts of gladness and strength. We pray total recovery over Jay. Give Jen & Derek the peach and strength that only you can provide throught this very hard time. Continue precious Lord to watch over Baby Jay that you will restore his body.
In Jesus precious name I pray, Amen.
Strength, peace and healing upon Jen, Derek, Luke and total restoration to Jay.
TS...
Jen,
I am friends with Joye (and a fellow Dr. Milazzo family), and she shared your blog with me. I just want to let you know that I am fervently praying for Jay and for you all. I am so sorry you are going through this.
I am praying God's blessings over you all.
-Jenn Tousey
Jen & Derek,
Our prayers are with your entire family! Jay-as you rest so your heart can get stronger and stronger know that so many people are praying for you and remember the song "Jesus Loves Me this I know..."
Sara Jackson (Formations Class FBC)
Jen and Derek
Praying for God's healing touch on that special little guy and strength and comfort for his parents.
Vickie
Jen and Derek,
I am praying that you are comforted by the love that surrounds you from friends and family, that the doctor's have wisdom needed to heal Jay's heart, that he has total recovery to his body, and that you feel God's presence like never before in the time. Hugs to you both.
Dana Etheridge (Formations FBC)
Jen and Derek...You are in my prayers....what a scary time. I pray for healing for Jay's heart, and comfort and strength for you to make it through these days. Love and hugs and prayers to all. Rhonda Lowe (Formations, FBC)
Jen, Derek,
You are constantly in our thoughts. We wish the best for little Jay and are comforted knowing that he is in good hands and getting the best care.
Larry and Sue
You all continue to be in our thoughts. We love you all!
Praying for healing and strength.
Oh Jen, I am so sorry that you all are going through this. I wish there were more that we could do, but rest assured that we are praying for Jay and your family. I will continue to have him on my mind all day and in my prayers. Hugs to all of you.
Rebecca
Jen and Derek,
Praying so hard for all four of you. That you can sense God's love and support for you at this time. That Jay's medical team makes good decisions and responds as necessary. That Jay's heart can strengthen during this time and that the blood thinnner does onnly what it's supposed to and nothing more!
God's love,
Noel Morris
Philippians 4:6-7 (ESV)
6 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
Raising Jay upto to Him today,
denise (Mandy & Ryan's friend in NE)
Jen and family,
My heart hurts for you all. I am on my knees praying for you now. Praying for the doctors and praying for God's miraculous strength to heal your sweet baby.
Love,
Erica Kim
We are praying for all of you and prayer really works. Ed and I have been where you are and know the fear in your hearts. We are tearful for you and praying for peace, strength and healing.
I can do all things through Christ who gives me strength. (Philip 4.12-13)
In God is my salvation and my glory; The rock of my strength, And my refuge, is in God. (Ps 62.7)
Be strong and take heart, all you who hope in the LORD. Psalm 31:24
love and hugs to you
Ed and Noel ( your FBC family)
Our family is praying for your entire family during this difficult time.
Sending prayers and huge hugs to you all.
Love, Annie
Dear Jen and Derek,
Please know I have had you all on my mind before we held VBS, knowing this was facing little Jay and your family. I pray that God's hands will be with you all where and how ever needed. You need strengh physically,emotionally and spiritually. I know your faith is strong, but this does not take away the pain of worry for your little boy. You all will be in my thoughts and prayers. I also pray for the skills and knowledge of the medical staff!!!
Thank you for sharing.
Lynn Loomis FBC
Jen -
We are praying for you, Derek and Jay and hoping that the worst is behind you already. It is said that God will never give you more than you can handle - but at moments like this, I always wonder just how much God thinks we can handle! Try to remember to take care of yourself as well as taking care of Jay.
Diane
Jen and Derek,
You are in our thoughts and prayers. I was so shocked to read this. I started crying immediately. I can not imagine going through this.
Dee and Bob Derr
Praying, praying, praying for each of you, the medical team, and everyone. Please know that you are each cared for so much and being lifted up so often by your church family. We love you guys!
Blair, Jeremiah, and Emory
Jen and Derek,
Oh, how we are praying for you and Jay. I can only imagine what a scary time this is for you. Love to all of you, and know that you are not alone. Take care of each other.
Kimberly and Alan Taylor
Jen and Derek,
Les and I, my church and Facebook friends are all praying for your family. I'm so sorry that you have to go thru this.
Laura (met you all at Jane's for family pics)
Jen, Derek, Jay, Luke, Laura, Mike, Matt...I am praying for all of you and sending all my love. Please know everyone that knows you is praying and sending all our love.
God Bless you all...
Hugs~
Susie
Hi! I am a friend of Joye's and she sent me your way thorough her blog. I am also a fellow heart mommy. I will be adding your precious family to my many prayers!! Hoping the echmo gives him the rest he needs so he can recover from surgery.
Stef
http://www.whenlifehandsyouabrokenheart.blogspot.com
Know that we are praying "BIIIGGGH" hard for all of you. Jesse was "naming" his church friends last night as he got ready for bed and Jay was at the top....hope you know he's even got the little prayer warriors on his side.
We love you and wish we could be there with our arms around you.
Keep talking and singing to him--I truly believe I heard the voices of family and friends when the doctors told them it was impossible for me to do so.
Praying for all those around you--I know that they've seen how special you all are and are working to help Jay get better too.
Cara Lynn (for Jamie and Jesse, too)
Jen -
Helen emailed us all to let us know what had happened. Am sending prayers your way and Louise and I will pray together tonight for sweet Jay and the rest of your family.
xoxo -
Thea
We are all praying for you an your family and all of the doctors and nurses an medical folks. Hugs and Lots of love.
Jen,
I so hope things have gotten better as the day has progressed. My thoughts and fervent prayers have been with you all. Jay is a tough little guy and he will make it through this. Hang in there, and please know how many people love you all and are praying. May God hold Jay in the palm of His hand.
Love,
Neva
Jen and Derek,
Your family has been in my thoughts constantly. I have never said so many prayers in my life. I don't have the right words to say. Just know we love you guys. Dawn, Mike, Hannah & Kaleigh
Jen and Derek,
I am praying for a speedy recovery for Jay. I pray that God uses His healing power to mend Jay's little heart and make it work in perfect order. I love you all very much and pray for your strength.
Theresa Cry
Dear Jen, Derek, and Luke,
We would like for you to know that you are in our prayers! Keep God in the mist of every conversation, every decision, and most of all, walk in the light, and stand on your faith to see you through! We love you!
Your Bright Horizons Family!!!
Derek and Jen,
Our prayers are with the both of you and especially with Jay. We pray that Jay's heart is resting and growing stronger over these next hours and days. We pray for the medical staff as they care for Jay during his recovery. And we pray for both of you, that you are able to find strength and comfort in knowing that God is ever present with you all, cradling Jay in his arms and carrying you all through this scary time, and that your family is being lifted in prayer by so many who love you all.
Love,
Will and Karen Poteat(Formations,FBC)
Our family is praying for Jay, your family, and the medical staff caring for Jay. Our hearts break to think of what you must be going through. You are constantly in our thoughts and prayers.
Much love to all of you,
Lynn Marshbanks (FBC)
We just got to a computer for the first time in 2 days to see the news. We are praying hard tonight for you guys! We are so sorry about this and your updates bring that familiar sickness to our stomachs. Hold onto each other and to the Lord--let your voices to Jay be whispered in his ears so that he can feel your closeness. And, make sure he has his little cow lovey, too!
Dear Jen and Derek,
You are in my thoughts and prayers.
David Guzman
Jen and Derek - Woke up today praying praying that last night was better, that today is a new day, and that little Jay is getting stronger. Will lift you all up throughout the day today, and trust that God hears the prayers and is in control. Mallory & Chuck (FBC)
Jen and Derek,
Hardly a moment goes by when we are not thinking about both of you and dear Jay and his recovery from this surgery at such a young age. I’ve looked at the photo on your blog so many times and he looks just like his Daddy! We are praying for Jay’s steady improvement each day, knowing that God is watching over him and that his doctors and nurses will be attentive to his needs. Before you know it, he will be home again, and we will celebrate this day!
Barbara Nickel, FBC staff
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