I don't think I even know how to describe my feelings at this point. They were feelings of incredible pain but there was a peace at the same time. Milo and I cried and drove and made phone calls and talked and cried and drove.
My mom held Josiah in her arms until we got there. At 4 o'clock Sunday afternoon I took my son into my arms for the first time with no tubes, wires or monitors. I held him for several hours while we said good-bye and as nurses and doctors came into say good-bye. We spoke with Dr. Graham who told us exactly what had happened. He told us that at one point they got Josiah's heart started again and thought they were over it. They were just about to call us and let us know he was doing better when his heart stopped again. Everything happened so fast with no warning signs. They gave him all the drugs they could possibly have given him and his heart would just not come back. Dr. Graham said that the only thing that he thinks could have caused this was that his BT shunt clotted off and did not allow blood to flow to his lungs. Josiah's BT shunt was a gortex tube that was placed during his first open heart surgery when he was 13 days old and it was the only way that blood flowed from his heart to his lungs. It is usually removed when children have their Glenn surgery because a new, more effective pathway is created at that point. That is the surgery that we had found out a week prior that Josiah couldn't have. This shunt clotting off has always been a risk. When it clotted off there was no blood flow to his lungs, which means no oxygenated blood to his body. Because of Josiah's low oxygen saturations to begin with he has a very low reserve and his heart immediately became over stressed. Dr. Graham said that a BT shunt clotting off is one of the very few things that can happen that they can't do anything about. The only way to fix it would be to take him to surgery or the cath lab to break up the clot, but obviously you can't do that while Josiah is coding.
Milo and I were very confident that day, as we are today, that the doctors and nurses did everything they could possibly do. Josiah received the best care he could and for that we are eternally grateful. We thank God that this happened while Josiah was in the PCICU because we don't have the "what if's" or the guilt of not being in the right place. This would have happened to us at home if we had been home. Even Dr. Graham said to us that he was now grateful for Josiah's fevers, which we were all so annoyed by, because it was the only reason he was keeping us in the PCICU. If this had happened at home there would be so many questions and so much guilt.
While, I'm not sure I'm grateful I wasn't there when Josiah passed I am very grateful Milo and I were together. This was only the 3rd Sunday in 6 months that Milo and I were together. I couldn't imagine this happening with Milo in Greer and me in Charleston.
At 7:30pm, Sunday, January 24th, Milo and I gave our sweet Josiah our final kisses and said our final good-byes. I couldn't walk out of that unit with out Milo holding me up. Again, no words to really describe what we were feeling at that point.
This post has taken me about 4 days to get through. I have so many other things that I want to write about but it's hard, the pain is real. I do believe that it's therapeutic for me to write, it's just more difficult than before. I want to keep blogging so please bear with me as I figure out how to do that now. I don't even know what to label my post any more.
-A heart that holds on