OK, I have a few questions. What was the shunt that clotted off? Was that what kept the atrial septum open? Do you torture yourself because you weren't there when he passed? I sure hope not! I have often thought that it would be easy to feel guilty about that. But, I hope you don't because I still think it was for the best and I am thankful that you were together, I think that was part of God's plan. Here is a real challenger of a question. What was that ride back to Charleston like? What do you think, talk about, prepare? I remember getting Melissa's call and finding out that ya'll were driving back. I remember thinking that this was probably the longest ride ever.
On a different note, how is Ali doing? She was in a sledding or skiing accident in Buffalo right before Josiah passed, correct? I never saw an update about her.
The shunt that clotted off, which was most likely cause of Josiah's death, was something that was placed in Josiah's heart when he was 13 days old during his first open heart surgery. This is what Josiah's heart looked like after his Norwood surgery.1 - Blalock-Taussig shunt (temporary)
2 - atrial septum removed
3 - patch where pulmonary trunk is disconnected from left and right pulmonary artery
4 - aorta and pulmonary trunk anastomosed together and the aorta made larger
Blood flows through the anastomosed aorta and pulmonary trunk to the aortic arch. A shunt connects the aorta to the pulmonary arteries, providing the lungs with blood to oxygenate.
Josiah's shunt (a BT shunt) depicted by the #1 was a GorTex tube placed to connect the new aorta they made to the pulmonary arteries. So when Josiah's one functioning ventricle would squeeze, it would send blood up the aorta and to his body, but some of it would fall passively through that BT shunt and go to his pulmonary arteries and out to his lungs, where it would pick up oxygen and then be sent back to his heart. It was the only way for blood to get to his lungs and become oxygenated. This is not the most efficient way for his heart and lungs to work and that's why getting to the second stage surgery the Glenn was so crucial. Unfortunately, Josiah's lungs never got well enough to move on to the Glenn. One of the risks of this shunt is it clotting off, meaning that a blood clot could form and block blood from being able to flow through there. Josiah's shunt (I can't remember exactly) was 3-4 mm. A millimeter is about the size of a grain of sugar, so this tube was no more than 3-4 grains of sugar. Josiah was on an aspirin regimen to keep his blood thinned out, but the doctors are pretty convinced that a clot formed and got stuck there. When that happened there was no way for blood to get to his lungs which meant that the blood being pumped to his body quickly lost oxygen and his body received no oxygen. For Josiah, in his condition, this all became fatal very quickly.
I don't torture myself for not being there when Josiah died. I do believe it was part of God's plan. There was a reason I felt such a strong urge to make the 4 hour drive home on Saturday afternoon to be with my husband. I certainly wish we had both been there. But if the choice was me being there by myself and having to call Milo and wait 4 hours until he could get there knowing he had to make that drive himself or me not being there and us being together. I choose being together. However, I can't say that I'm glad I wasn't there. I'm very grateful that my parents were with him if I couldn't be and that they held him until we got there.
The drive to MUSC that afternoon was hard, very hard. Thankfully, we were still at church and were able to leave the girls with friends. We started driving while they were still doing CPR on Josiah after about 20 minutes of no phone call back from MUSC we knew he was gone. I finally called about 35 minutes down the road and spoke with the attending where I got the confirmation that we feared. I told him that I didn't know how fast "things" happened but that I needed him to do whatever he could to keep Josiah's body warm until we got there. He said he would and then we hung up. We cried, not hysterically, like I have done several times since, just cried. We sat in silence with tears rolling down our faces. Milo told me that he couldn't get the song out of his head that he was leading in church when Josiah crashed, "You make everything Glorious." I told him I was thankful we were together. We drove at a reasonable speed. There was no reason to risk an accident. It was raining. I made some phone calls to family, friends and some of Josiah's favorite nurses to let them know they were welcome to come say good-bye. Then we talked about some of the things that we had never talked about but were always looming in the back of our minds. What do we do now? What do we do with Josiah's body. Do we bury his body or cremate his body? Fortunately, Milo and I agreed on cremation. The main reason being that we wouldn't know where to bury him. I couldn't stand the thought of us ever moving from Greenville and leaving his body behind. All in all, it was a fairly peaceful ride. Peaceful but achingly sad. I think it was just something we had to do. We had to make that drive because we had to hold our son and say good-bye.
You didn't ask about saying good-bye and I couldn't write about that right now anyway. It will have to be another post for another day. I planned to get to the other questions other people asked me but Stephanie drained me with those! Thanks for asking though.
We love Josiah so much. I don't know what else to say. I just love him so much.
- A heart that holds on