(showing me his dirty hands and face after a chip extravaganza)
Ryan has something call a cor triatriatus membrane in his heart. In layman’s terms, he has a flap of ‘skin’ that sits over the mitral valve (in the left atrium). When flaccid, it allows blood to go through. Some people have cor membranes their entire lives without symptoms. For others, the membrane starts to grow rigid and restricts blood flow through the mitral valve. The cor continues to grow in rigidity eventually closing off the blood flow completely. The normal course of action is to perform open-heart surgery and cut the membrane out.
Ryan’s cor membrane grew to an emergent level when he was 2 months old in April 2009. Because he was so unstable and because the team didn’t want to cut through the skin-like membrane over his heart (pre-chest repair), they decided to try to balloon open the membrane in the cath lab to eliminate the need for surgery.
We knew it was a temporary fix. The cor membrane would surely grow rigid again. We just didn’t know how much time we had.
On March 5, Ryan had an ECHO to see why he was so cyanotic (blue). The report showed Ryan’s cor membrane was measuring a rigidity of 12. It was 2 in April 09 after the life-saving cath. I asked the cardiologist what number would mean emergency surgery. He didn’t have a clear answer, but said they didn’t want it getting to 20. Everyone in Pittsburgh and DC agreed we needed a heart catheterization to accurately assess the situation.
We were in the cath lab with Dr. Kanter (an Intervention Cardiologist) by that Friday. During Friday’s heart cath Dr. Kanter was able to perforate and pop the membrane once again – something we weren’t sure would be possible since over time the membrane gets thicker and harder to deal with. He was able to get the rigidity back down to 2, a truly amazing feat.
This time we don’t want to wait for the membrane to grow again. Ryan was sicker than we thought going into the cath lab…. and wouldn’t be stable enough for surgery.
We all agree it’s time to cut the membrane out. Ryan is stable and the membrane is the lowest it’s going to be. With that being said, Henry and I will be back in DC with our Little Boy Blue on Friday, April 27 for open-heart surgery.
Although surgery is something I advocated for after getting the results of the cath, when I got Dr. Donofrio’s email stating to schedule something within 4-6 weeks I nearly choked on my heart. Tears sprang into my eyes as I thought of sending my stable, well-looking, happy little boy into open-heart surgery. But it must be done. Now is the time. The pressures in his lungs are as good as they’re going to get and it’s now he’ll best be able to tolerate such an extensive procedure before the membrane starts growing again.
We went for an ECHO this week and will get another one in three weeks to reassure us the membrane is inactive until the surgery. Should it start growing we will push the surgery forward to give Ryan the best chance of recovery. Please keep us in your prayers as we face yet another bump in our road.
(c) 2016 Leighann Marquiss
Comments (14)
Brings tears to my eyes thinking of him going through open heart surgery.
covering your family in our prayers!
Proverbs 21:1 says, “The heart of the king is in the hand of the Lord.” Surely our “little king” is held in the palm of God’s hand. Love and prayers!
Praying for Ryan’s safety and a successful surgery, and for you to once again have a peace that surpasses all understanding.
Do you need anything while you guys are down here? Where are you staying? How long will Ryan be hospitalized?
I will continue to pray for sweet Ryan.. You will all be in my prayers.
Many prayers that Ryan has a successful surgery and quick recovery.
Praying for Ryan and your family. Praying that the Lord has his hand on the Dr’s when they perform the surgery and that you will find peace in knowing the Lord has shown much favor to Ryan and will continue to do so.
John and I knew Ryan would have to have another surgery one of these days, and so we constantly pray that he will grow healthy and strong, so that when the surgery is done he will come through it ok. I guess I didn’t think it would happen yet…but as you said, it is good to have it when things are looking good.
We will be praying for Ryan and for all of you Leighann. Keep us informed on here so that we will know exactly how to pray.
Lots of love,
Linda
wow….praying! let us know if you need ANYTHING while you’re here!!!
Scary stuff! Ryan is a fighter though and I have no doubt will come through surgery and recovery with flying colors. I will pray for God to guide the surgeon’s hands as well as be with you and your family.
Praying, Leighann… for peace that passes all human understanding, and for Ryan…health leading up to the surgery and healing afterwards.
Oh, Leighann, I know how your mother’s heart is aching. The dread and fear of the surgery, recovery and all that goes along with it as well as the knowledge that you really have no choice. I remember the night before James Hampton’s last surgery wishing I could scoop him up and run away, but knowing that was not in his best interest nor would it have the desired outcome. I will be praying for Ryan, the medical team that will be involved and your family.
Thank you so much for allowing us to walk this journey with you.
Carie
I’m sorry to hear Ryan will need another surgery so soon. Thinking of you all and sending lots of heart hugs!
Wendy
I will keep Ryan and you all in my prayers. He is so precious and his happy face is very joyfully contagious to me. 🙂
Will be praying for Ryan’s health in the weeks to come. Also for mom and dad to get through this as well. May God Bless, Comfort, and heal little Ryan. Prayers going up.