Noah recovering in the hospital after his heart catheterization
He did great, but was so tired for a few days – he kept passing out on the couch and Pepper kept him company
I wanted to write an update after Noah’s catheterization last Tuesday. It was a very long day. He has some very hard memories and associations with hospitals, so while he did well, it was very stressful for him and for us. He gets very scared but he is such a brave kid. He knows it has to happen so he just gets through it.
The catheterization was first to check all the pressures and make sure that the Fontan procedure was still possible. Most children with Noah’s heart condition have this surgery at a much younger age, usually by age 3, and the concern was that the high pressures from not having the surgery would have damaged Noah’s lungs too much for him to still be a candidate. We have known this was a possibility since we were matched with Noah a year ago, and that is a long time to wait for answers.
They let me stay with Noah into the OR until he was asleep. They told us it would be 3-5 hours. If they got in and it was bad, they would pull out because there wasn’t anything else to do. If they got in there and it was good, they would do a number of things to prep his heart for the Fontan.
Well, 2.5 hours in, they told us it was over and the surgeon was coming to talk to us. I was braced for the worst. She came in and told us immediately that Noah was a great candidate for the Fontan, all the pressures were good which meant his lungs were in good shape, and we could proceed. I burst into tears – poor woman! She had no idea how long we’d been waiting for answers! But I just told her they were happy tears! The reason his surgery was so short was that everything looked so good, there was nothing to prep – he was all ready for the Fontan without any additional procedures!
So here’s your miracle for the day. There is one artery that leads to Noah’s lungs. If it had been built open the way it should have been, the years of waiting would have left Noah’s lungs completely scarred. If it had been closed the way it usually is with his heart defect, he would not be alive. But Noah’s was narrowed – exactly open enough to keep him alive, and exactly closed enough to have protected his lungs this whole time. Just amazing.
God is so good. Don’t get me wrong, God is so good even if we’d gotten bad news about Noah. I believe that with all my heart. But in this situation, it’s just that I can sense His presence and protection over Noah in a way that is truly miraculous and comforting. He has plans for this kid, and He already knew how his heart was working.
After the surgery, Noah had to lay flat for 6 hours. He was pretty agitated coming out of anesthesia, and I was grateful that we had an interpreter, because in that hazy state, he really needed his first language. Keeping him down was very difficult, and I know that weeks in the hospital will be a real challenge for him and for us.
There were several things that blew his mind, though. One, that he got his own room and it had a TV and a bathroom. That was incredible to him. Two, that there was a huge menu he could order from, anything he wanted, and they brought it TO HIS ROOM. He could not get over this. After he came home, he described the process of ordering and receiving food to Toby multiple times. He’s already planning what he will have during his next hospital stay.
I appreciated this stay because we were on the cardiac floor and it gave me a preview of what we would be doing for a few weeks – helps me plan. And I have to say, I was beyond impressed with our doctors and with the nursing care – especially our nurse Eric who was absolutely amazing. It gave me a real sense of peace about the hospital stay.
We heard on Friday that Noah has been scheduled for his Fontan already – it will be on July 7th with Dr. Shinoka. Even though this is exactly what we were hoping for, I am very scared. I’m up at night picturing what they have to do to him, and it’s really hard to keep my mind out of the frightening places and focused on the Lord. But He is with me all the time. And I love and cling to these, some of my favorites verses:
Phil 4:4-9 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
Noah knows about the surgery and is actually relieved to have a date. This has been a big thing hanging over his head for years too, and he’s a planner, so it’s good for him. This first thing he did was ask to see a calendar so he could count the weeks. Then he said, “Okay, got it!” and ran off to shoot Toby with water guns.
So we’d love your continued prayers! And we’ll keep you updated here and on Facebook, etc. Thank you so, so much for your prayers and beautiful messages! We have appreciated them so much!