John had a cardiac cath procedure on August 28th 2015 to place an extra stent in his aorta. The blood flow through the aorta is now flowing very well after the second stent to reinforce the area. During the cath procedure, the doctor noticed a membrane in front of the aortic valve that is causing the blood flow to be turbulent as it exits the aortic valve. She informed us that the membrane needs to be removed, and the only way to do it is through open heart surgery. She suggested we make an appointment with the surgeon, Dr. Starnes at Children’s Hospital Los Angeles to discuss it.
We met with Dr. Starnes on November 22nd, 2015. After reviewing John’s information, he informed us that he would like to go in and shave off that membrane in front of the Aortic Valve. He also saw a small membrane growing by the Mitral valve that he will take care of. To our surprise, he went on to mention that he will make a decision during the surgery, whether or not the aortic valve itself needs to be replaced. There might be some wear and tear on the valve itself because of the turbulent blood flow created by the membrane, that has been hitting against the aortic valve. They will need to consider if the turbulent blood flow is causing the valve to leak or if the valve itself is leaking.
If valve replacement is needed, it will be done through a process called the Ross Procedure. They will use Johns pulmonary valve to replace his aortic valve. This will be his living tissue which can grow with him as he grows. They would then replace the pulmonary valve with a cadaver valve. The cadaver valve will not grow with John as he grows and will probably need to be replaced within 8 to 10 years. The good news is that the medical field has already advanced in replacing a pulmonary valve in the cath lab rather than having another open heart surgery.
John is set to have surgery at CHLA on February 4th, 2016.
HOW WE ARE DOING?
As I sat in the doctors office with Ida, waiting for the heart surgeon, Dr. Starnes, to come in and talk to us about the upcoming surgery, it was like sitting on pins and needles. On one hand I know that God has a plan for John and that my Faith is telling me God will take care of this one too, yet on the other hand it hurts me to know that John will have to go through this again. The good news is that God is a loving and healing God. My trust is in Him. He knows what is good for John, and has placed us in the hands of an amazing, and I mean amazing, Heart Surgeon in Dr. Starnes, and a great hospital for Johns care in CHLA. My prayer again is on that promise God gave us the first time John had surgery, “It’s not what the doctors think it is, Trust in Me.” My prayer is that Johns valves will be stronger than expected. I know my God still performs Miracles, and John is definitely one of those miracles. God will be using these trials in our lives to make our Faith even stronger. God will be using these trials in Johns life, to make him a warrior for God. I pray that his testimony will bring a wave of Glory to God. Through it all, I love the way God has given me so much peace in all of this.
Hearing the news from the doctor that our 6 year old is going to have another open heart surgery was not an easy thing at all. What made it even harder for me was that we heard it the same week my mom went to be in heaven two years prior. It’s been a difficult few years for our family but in the midst of it all we always see the Lord working. Seeing the Lord work specifically in our lives helps me to keep having hope. The news of John’s aortic valve possibly needing to be replaced is very scary. At the same time, if it does seem weak, I’d rather have them replace it now, rather than in a few years in order to avoid yet another open heart surgery. I don’t know what’s best for John and his body, but I know that God knows what he needs and He’s given us talented and gifted people to be His working hands. I completely trust the team at CHLA and it is very comforting to know we are in the best place possible for John. It took a few weeks for me to get over the shock and overwhelming thoughts of all that needs to happen if John is going to need surgery. Many have been praying for all of us. I saw a distinct turn in my feelings from fear and the unknown, to peace and trust. After speaking more with the doctors, after divine appointments with friends, after support from everyone around us, and after much much prayer, the Lord has definitely brought new perspective, hope, and increased faith to go into John’s second surgery.
John (John John)
How is John feeling? He has a divine spirit over him concerning his upcoming surgery. He knows he needs to go to LA and he knows the doctors are going to work on his heart. When I tell him about it he stares at me with a huge smile! He is happy and willing to go do what needs to be done. The only complaints he’s had so far are that it’s going to be boring, and that it will hurt. Yet he still doesn’t fight going, almost as if he knows it’s what’s best for him.
John has been home from school since Monday January 25th. I wanted to keep him home to lower the risk of him getting sick before surgery. I have been teaching him his school work at home and that has been an adjustment. I plan on keeping him home for two months after surgery and sending him back to school after Easter Break. He is excited to be home during this time.
WHAT TO PRAY FOR
Pray for wisdom for the surgeon who will be making decisions on the spot for what is best for John’s heart.
Pray for miracles in John’s heart to once again be much better than what doctors are expecting.
Pray for recovery to be smooth without complication.
Pray for the nurses who will be taking care of John after surgery.
Pray for opportunities to be presented at the hospital to minister and encourage others.
INTERESTING WAYS GOD HAS WORKED SO FAR:
Once again our insurance changed right before the big procedure. We were able to get the best health insurance for John.
Liana started a new school this year. Through her school, Ida has been connected with the most amazing heart moms who have been through it all. Not to mention her class being so supportive and offering all kinds of help. Also they have a prayer ministry through the school with prayer warriors praying for John’s surgery. God is moving in mighty ways!
John kept asking to be homeschooled during the school year. Now he gets a taste of what homeschooling would be like. (I have a feeling he’s going to miss school so much homeschooling will be out of his system!)
We were very sad that John is going to have to miss so much school because of the timing of his surgery. It was also unfortunate that John is going to miss his little league season. He loves sports! But, on the bright side, once summer comes, he will not be limited with all the fun summer activities he would have been limited with if we did the surgery at the beginning of summer such as swimming, sports camps, the beach, etc. Just a little something to look forward to.