It is 7pm and we are settled into the CVICU for what is expected to be a quick stay. I had a long chat with Dr Z today and he had a long chat with Dr Rosenthal. Owen's coronary artery disease has progressed significantly in just the past 4 months. His proBNP (heart failure number) was elevated to 13000! Normal is under 100 and he has been sitting at about 2800 for the past year. He is at risk for arrhythmias and cardiac arrest due to the large blockages. We need to get the biopsy results back from today to see if we are dealing with rejection or if the coronary arteries are the only issue. Then we can come up with some short term treatment plans. The big picture is that he will need to be relisted for transplant and soon. I'm a little heartbroken but I know we can totally conquer whatever we need.
Short term treatments could be ballooning the coronary artery to buy him time while he waits for another heart. An implantable defibrillator while he waits for transplant. I'm not sure if he would be able to wait outpatient or inpatient. It's all kind of up in the air. We are working with Stanford and Phoenix to come up with the best plan but we will see what tomorrow brings. Tonight we are having a sleepover in the CVICU.
Owen relaxed and made it through the long six hours of laying flat. He has eaten a billion buffalo chicken wings, pretzels and peanuts. I'm pretty sure we will both crash early. It has been an exhausting day... to say the least.
I didn't miss this view that we had for five weeks last year in the same exact unit. I am amazed we had another wonderful year with his perfect heart. We know now that things won't improve. Coronary Artery disease is not reversible and it's time to take the next step. God's timing has been perfect in Owen's life thus far and I have no doubt that he is guiding the next moves. Thank you for all the prayers and good thoughts that you have sent.
4 comments:
My prayers are with all of you. God works miracles every day and Owen is one of them. Dr. Rosenthal is the best of the best, you know that and so does everyone here on the West Coast. Owen couldn't be in better hands on this earth and yet still, God holds him. Let us know if there is anything you need if you end up coming to LP, we are a short 3 hour drive there and may be going there ourselves again, with Taylor.
I'm so sorry. As always, I love your outlook and I'm with you, God has this! Owen is such a superstar and has overcome so many obstacles, he's truly just an amazing kid. Heart hugs friend! Praying!!!
I am thankful they found this before anything might have happened. Owen my sweet superhero is in the bestest of hands, so I do not worry or fear, like I do for other little ones. From Mama to all the caring doctors who are always on top of things and above and beyond amazing.
With all the love and positive thoughts he can have, he will prevail and be healed of any problems.
Everyone please say this Prayer,
Loving Father, you bring healing to the sick and make them well again.
Trusting in your great love and mercy, and believing that
whatever I ask from you in the name of your Son, Jesus,
You will grant me if it is what is best and in accordance with your Divine Will,
I lift up to You Owen Simmons who is in need of healing of his heart disease.
Hear my prayers and bring Sweet Owen into your loving presence.
Let the grace of your divine love flow to the different parts of his body,
reaching the inner recesses of his being.
Touch his heart and all the areas afflicted with troubles
and let his body organs function normally.
Touch his blood vessels and arteries and let his blood flow properly.
Bring healing to all his nerves, muscles and tissues,
especially those surrounding his heart.
Console him, ease his pain, fear and suffering and restore him
to full health in body, mind and spirit.
May he find hope in his suffering and offer it as a share in your own passion.
Create a new heart in him and renew his life, loving Father.
And after he has been healed, may he be a witness of your
healing power and love and bring glory, honor and praise to you.
All these we pray in Jesus’ name through Mary with all the angels and saints.
Amen.
Praying for Owen, you, your family, his doctors and caregivers....he is such a fighter, I have been following along with your story and you are always in my prayers, this was a shocker though because I hadn't read your blog in a few weeks.....keep the faith and God be with you. A friend in East Texas, Pam.
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