Well where do I even begin?! Yesterday I decided to send a text to a few ladies I consider "mentors" to me. I asked them to please join me in prayer and confession that we would get THE phone call today with THE plan for Gavin. I started to get concerned since the last I heard from a doctor was Friday. We had made some medicine changes and were told a plan was in the works and we would know soon. I guess my biggest fear is that the doctors didn't have confidence in how to proceed with Gavins current heart situation.
I text these ladies and prayed all day I would get a phone call. Well 6pm rolls around and I had lost hope. About 6:30 I hear my phone ding. I go to look at it and it's our surgeon!!! Thank you God for answering our prayers!! He informed me that a definitive plan was set in place and our cardiologist would call tomorrow. He reassured us and checked on Gavin. So I felt a huge sense of relief after knowing I would definitely get a phone call and a PLAN tomorrow!!
Adam calls me a little later, once he landed in Denver. When we were on the phone he said "hold on, an unknown number is beeping in, want to make sure it's not my flight getting delayed." So he clicks over and takes a while to click back to me. Once he does he says "hey I have Dr. O on the other end and he wants to conference with us." We had a 40 minute discussion on 3 different ways to approach Gavins heart situation. Here they are, I will try my best to explain in non-crazy medical talk. 😉
1. Heart cath with the intention of going through the groin and gaining access to the fistula by burning or using a needle to pass through. This will be the most risky and time consuming part. Once that is done successfully they'll be able to get to the area needed to close off blood flow to the small part of his left ventricle that is there. If for any reason this process takes longer than they want they will move to step 2.
2. Hybrid procedure: part heart cath part open heart surgery. The surgeon will come into the cath lab. They will roll Gavin to his side and gain access through an incision made in his chest. This would not require heart/lung bypass machine. Obviously this would be a longer recovery for Gavin.
3. Open heart surgery with the heart/lung bypass machine. This is the least favorable option. Both the OKC and Gavins surgeon who is in KC now want to avoid this option if at all possible. If it came to this and Gavin was stable, we would transfer to KC to have this done by Gavins surgeon.
The reason this took so long to get a definitive plan is because our amazing team of doctors were being extremely thorough. Talking to top doctors across the country and getting their opinions. Basically were on an even playing field whether we go to OKC or KC. No one including the doctors they spoke with have experience with Gavins current situation. It is so rare that most surgeons won't see this in their career. There was one other case at a CA hospital that was similar but not identical to Gavins. That child's procedure was successful and they're currently doing well! We're believing and confessing this for Gavin!
After MUCH consideration, prayer, multiple conference calls with doctors, talking with our family and most importantly Gavin, we have made a decision. We will do this in OKC next week (looking at Tuesday-tentatively). Adam made Gavin a kid friendly graph. Drawing out what was going to take place. He put OKC on one side and KC on the other. Gavin of course uses his baseball analogy and says "ok so basically this is Dodgers vs. Royals." 😊 I just love this kid and his way of thinking. His courage and bravery is so uplifting to me! He went with the Dodgers because he wanted to "wake up in a hospital he was familiar with and be with all his favorite nurses and Dr. O (whose done 99.9% of his heart caths). Now that Gavin is 9 we want him to be a part of the decision making. Especially knowing we're on an even playing field with both hospitals. We really can't go wrong either way. We want Gavin to feel comfortable and reassured with where we're at.
I thank you all for the continued prayers for our family. Last night was a tearful, hard discussion with our incredible family. Can we just talk about how we have the best parents ever? We value their opinions so much. They've held us through this journey. We also have some pretty incredible sisters and brothers-in-law. Always willing to lend a hand (even from afar!)
We can't wait for our Christmas miracle next week. And to come home and have the "BIGGEST, BESTEST party with his cousins, ever!" (According to Gavin). We're looking forward to that party too son!
Pics from last week:
"Party in a box" from our sweet church family. Gavin helps with the Rhodes Christmas party at our church each year. He was so sad to miss this year. So one of our sweet sisters brought the party to him!
We also received multiple acts of kindness last week. Grocery shopping by our awesome neighbor Shannon. Granny B staying with me while Adam was on his work trip. She also went out of her way to help however I needed! Our sweet friend Dawn, went on a search for Gavin some house shoes for the hospital. Our sweet friends and family who are willing and ready to lend their homes to anyone coming to OKC next week. Our incredible school LCS, literally the best staff and families on planet earth. I can't even tell you how amazing they've been to us! I am so sorry if I've left anyone out and I plan to personally thank each of you in someway. We're so blessed, so loved.
Trusting in His word, feeling peace in His presence.... “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
John 16:33 NIV
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