Bump in the Road

It wasn't a surprise. I was the one pushing for tests. We knew something wasn't quite right. Yet, when the call came, I felt unprepared. I guess even though I knew Levi's absent pulmonary valve was beginning to cause issues, to have it confirmed, well, let's just say to hear it is a lot different than knowing it. In July, our little guy was out playing baseball. He came in complaining of chest pain, shortness of breath, and palpitations. It was 104 out so, after getting some water and resting he was fine. I checked his pulse and oxygen levels and he was good. We called the cardiologist and they ordered a heart monitor to be worn for 30 days. We made it 11 days when Levi broke out in a terrible allergic reaction to the chest pads. Even in 11 days no unusual heart activity was seen. He never experienced these symptoms again, however, he began inhaling quick deep breaths that sometimes would end in a cough. And while he continued to play hard I could tell he was holding back. It just wasn't Levi.

It's been forever since I've written a blog post, so for anyone new, Levi was born with several heart defects, one being an absent pulmonary valve. In 2014, he had a bi-ventricle repair but it was decided to hold off on the valve since he was functioning okay without it. The hope was that he would make it to 15 or so so he could have an adult valve placed which would allow fewer surgeries down the road.

In May, he was cleared as stable with no significant change. They suggested a baseline sedated MRI to help them have an idea when a valve would need to be placed. There was no rush. Just whenever his next surgery would be. In September, during his cleft lip and palate evaluation, we were told he was ready for his bone graft. We were thrilled because the MRI could be performed. God's timing is always perfect. What was to be a baseline test originally would become diagnostic test for us. It couldn't come soon enough for me as my gut told be his heart was struggling and no longer able to compensate for the absent pulmonary valve.

A week before surgery our insurance decided the MRI was not needed. They said he was stable in May and the ultrasound was inconclusive. I am so thankful for Dr. Daniels and Jenne Hicks who listened to my concerns. Jenne spent endless hours fighting for this MRI, but the day before surgery we still didn't have approval so the MRI was cancelled. I felt sick as I knew he needed this test to confirm my suspicions. The day after surgery Jenne came in and said it had finally been approved. While ecstatic to have the approval, Levi would not be sedated. His IV was still in so we decided to try it awake. Levi held still like a champ for an hour and a half.

The call came Thursday. Jenne said my instinct was spot on. Levi's heart needs a pulmonary valve placed. The right side of his heart is very enlarged and working too hard. He will need his valve placed within the next 6 months. The sooner the better.

This comes with many decisions we would like prayer for. With Levi's bi-ventricle repair we ended up in Boston for three weeks. Our plan has always been to go back there when the valve placement needed done. There is talk he may be a candidate for a transcatheter valve placement. This could probably be done locally. Some of the best heart cath doctors are at Nationwide. However, if there are complications we would feel better at Boston since his surgeon is there.

1. Pray that God opens and closes the doors so Levi is where he needs to be and with the doctor he needs to have.

2. Pray for Levi, who wasn't happy to hear about another surgery, 1 week post surgery. (Although he always amazes me and was back to his happy self 5 minutes later.

3. Pray he can have the valve placed through a catheter versus a 4th open heart surgery.