Our Story

  4/26/2002

On this one year anniversary wanted to thank that the medical team, surgeons, nurses, family and friends. We are thinking of them today on Owen’s one year heart transplant anniversary. We could not be we we are today without them and are forever grateful and thankful for their  calling to their vocation! Also would not be were we are today without the donor and the sacrifice they made. Thank you

 

 

 

 

This year we are forever grateful to the donor family for making such a difference in our lives and to all of you who have generously donated to COTA in honor of Owen and our family.

   We are just about   10months from his transplant and Owen is doing great. His last catheter on December 6 showed no rejection!!  We are still waiting on some more tests but will deal with those results as they come. His kidney function went from 62% to 94% so he is no longer in kidney failure at this time. We were told it can change at any moment, but we will take that victory!!  God is Good!

  WE GOT THE CALL !!!!!! 

It was April 24th and I had just left the hospital for the evening when my husband called and said turn around and come back. They accepted a heart for Owen! It took a second to process what he was saying until I heard the nurses and the excitment in the background on the phone. Many mixed emotions ran though us at this time. Because of the way the heart was going to be given to us  we did not receive it until April 26th. It was a very long day but had the privilage of knowing what time the heart was going to be arriving so we were able to wait outside the hospital and see it arrive in the SUV. It’s hard to put into words because each day so many little things happen to move forward and setback the process of recovery but overall we continue to feel blessed and privilged to have been chosen life from somebodys else’s family sacrifice . We firmly believe GODS hands have guided us through this entire process as well as many other things in our lives. 

This week marks one year anniversary from when his whole valve replacement heart failure, heart attack, heart transplant journey started at Advocate then moved to Lurie’s. This week last year on my birthday we were in the hosptial going through quite a bit of drama. This year on my birthday will mark his two month anniversary of his new heart. CRAZY. He had his 2 month catheter procedure and his pressue numbers are moving in the right direction which means the new heart is adapting well. He is continuing to feel better every day . He is wanting to do more activity and getting excited to get back to who he will be now. THANK YOU for taking the time to read this and all of your prayers and well wishes . 

owens journey

 

I remember where I was standing in our house when my OB/GYN called and said “One of your blood test came back positive for down syndrome”. She recommended a second level ultrasound to confirm the results. Those days seemed agonizing to wait. The ultrasound confirmed no down syndrome “just” an isolated heart defect. I thought great we can deal with that. I was 14 weeks pregnant and had a three-year-old and a two-year-old at home.
The rest of the pregnancy was much of a blur. All I remember was I needed to protect this baby and keep him growing and staying healthy until he came into this world. As we continued to meet with specialist we made our way to Advocate Christ Hospital in Oak Lawn and began our care of the best medical staff worldwide.
 
Owen was ultimately diagnosed with transposition of great arteries. He had other things that followed with that such as a VSD, ASD and a coarctation of his aorta. We knew nothing of this medical verbiage and became educated very quickly.
 
After he was born successfully by c-section on his due date at 7 lbs. 6 oz. his first surgery was at nine days old. He did well and went home two weeks later. More surgeries and procedures followed three months after that, two years after that and ultimately another open heart when he was 18 months old.
 
His next open heart wasn’t again until he was seven years old and it was a valve replacement. Went in on a Friday and discharged on a Sunday so we were very lucky. That held us until June 2020. Overall, with his cardiac journey, he has mainly only been on one or two medications. We’ve had the privilege of being able to live a somewhat normal life at home as a normal adolescent and teen. Only growing into sports restrictions as they got more intense through high school.
 
This is where his journey intensifies. The week of June 22 we went in for our valve replacement, which was routine, but coming out of surgery wasn’t so routine. He seem to hit every complication afterwards. The next day his vitals were going in the wrong direction so they re-intubated him. Wednesday he suffered a mild heart attack . Thursday they rushed him into a catheter procedure in the morning to discover he had 100% blocked left coronary arteries and followed that up with emergency open heart bypass surgery in the afternoon.
 
Our time in the PCICU at Advocate Hope Children’s Hospital was an up-and-down roller coaster for about two weeks. When we got home, I called to check in and told them one my minor detail, he wasn’t keeping food down . They advised us to come back in early for our follow up appointment which resulted in getting readmitted for another two weeks. The end of that stay resulted in an AICD pacemaker. Finally we got to go home. Now we moved from the congenital heart defect world to the heart failure world. Appointments were weekly revisiting the hospital. Medications went from one pill daily to 25 pills.
 
This is where transplant conversations casually began. In the meantime we were to contiune the heart failure medication regime hoping that the heart would improve. That up and down journey worked for about 6 months but a mri, near the holidays, confirmed that scar tissue from the heart attack caused irreversible damage and the medications were no longer effective.
 
So we cautiously had to leave our care at Advocate, our home for cardiac care for 16 years and start our new journey at Lurie’s Children Hospital in Chicago. It was very difficult to leave but are finding a new cardiac family with the medical staff. NEVER , NEVER forgeting where we started!!
 
We were admitted on March 15th ,2021. The next week they placed an impella device and offically listed him as 1A on the transplant list on March 26th. Owen is currently doing very well. He is a regualar comedian for the staff. He is staying very positive and buidling his strength for his recovery after transplant. He said “Mom I am going to use this next heart to the fullest. I’m going to stay healthy, eat healty and live my best life”. His father, 2 older brothers , one younger sister, extended family and friends are amazed at him every day. He has matured beyond his years and we can’t wait to see how he is going to make a differnce in so many lives. GOD has wonderful plans for him.
 
Thank you for taking the time to read his journey.

11 thoughts on “Our Story”

  2. We are praying for Owen and the whole family
    Miracles happen every day and we believe one is on its way for Owen. God bless all of you.

  3. Just wanted to reach out and let you know the transplant process is hard and if you ever need an ear to talk brad and I are here . Brad especially. Just know Owen is on my daily prayer list and your whole family too. Sending my love and prayers

  4. May he receive his heart quickly and school resume soon so he can share his love with all of his friends

    Catherine always thinks of Owen he has been a long time friend and always put a smile on her face.

    May God lay his hands on him now and give him the heart he needs

  6. We have been praying for Owen for a long time, and are today. Looking forward to seeing his smiling face again!! We are always here if you need anything.

  7. Kingsbury family, I am praying for you! Once I heard there was a heart for Owen I started sobbing I was so overjoyed!! I also live with heart defects. I was at University of Chicago for my mechanical valve replacement on 3/12/21 and unexpected had to receive a pacemaker 3/23/21. In addition, my 12 yr old daughter (who is a twin) has had multiple heart surgeries and we had the downs syndrome scare during pregnancy. God has brought your story to me for a reason. I am here as a prayer warrior for you! I’m sure you have a large support system, but if there is anything I can do to help your family please let me know.
    Praying for you!
    Heather Baughman
    Baughman2332@gmail.com
    Chesterton, IN.

  8. Thank you for sharing the journey. I only learned a couple days ago that Owen was receiving a heart transplant. I will continue to pray for him and the family as you all continue the journey.

  9. Hi Owen,
    My heart goes out to you knowing what is going on in your world. I sympathize with you and I have been praying for you. I love to hear you are optimistic and that gives me faith that you will pull through all of this. Sincerely, Mrs. Zastrow

  11. My heart goes out to Owen and his family. I remember Owen as a sweet young man who was a friend of my grandson and played on his baseball team. I just heard about the challenges they have faced and my thoughts and prayers are with him and his family.

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