Timing and trust are my arch nemesis at the moment. I feel a sense of desperation, waiting for things to happen, to change. I am at the point where I am throwing my hands up yelling at the sky to just hurry up already. The notion that every thing happens at the right time, is exasperating to me until a memory of my son, Pants popped up in my head.
A month before his first birthday, Pants had his second heart surgery. His heart surgeon was to place an artificial artery that would supply blood to his lungs, place a valve that was missing when he was born and close the hole in the wall of his lower heart chambers, a common heart surgery that was named the Rastelli Procedure.
The heart surgeon walked into the waiting room and sat across from me. I knew it was too early for him to be done, so I braced myself for what he was about to tell me. He told me he was able to put the valve and artery in, but he discovered that the veins and arteries in his lungs were so underdeveloped and weak that if he closed the hole in his wall chamber, the strong volume of blood it would produce would surely blow out the vessels. He told me he was going to close Pants up and see what happens.
The old, familiar sense of dread and panic washed over me. The thoughts invaded my mind, “This guy is way over his head with Pants. You got to get him away. Don’t let him open him up again.” I didn’t know what to do. I had taken Pants for a second opinion a month earlier and the surgeon was about as useless as the one he had. The other closest children’s hospital was four hours away.
After the surgery, Pants actually got a little better and stronger. He was able to start sitting up and he was even starting to try to crawl. Three and a half months later, he started to decline again. I was frantic and terrified, begging his cardiologist to tell me what I needed to do to save my baby, only to have her tell me that they decided they wanted to go in and place stents in his vessels in his lungs to open them up and handle the blood flow volume.
“Grace, what happens when he outgrows the stents? Stents won’t grow with him! You know this, isn’t there anything else we can do?” I yelled at the cardiologist. After she told me that this was the only option, I begged her not to do it. She told me that she was going to go back to the team and discuss it again, but she told me this was it.
I knew in my soul that this was not the right decision for Pants. I knew if his surgeon opened him up again, he would not survive. I had no idea what to do. I never slept, nor ate. My time was spent researching aimlessly, never finding the answer. Every morning I would plead that I would find it so I could save him. Watching him slowly die was beyond agony. I would stand under the stars at night and beg for a miracle so the misery would stop.
The meeting never happened, instead Pants crashed. I rushed him to the hospital and paced the PICU room floor rocking him as he screamed in terror whispering that it was going to be alright and for him to keep fighting. His blue tint had turned gray and his oxygen levels were hanging in the forties. I looked out the window of the room to see a cardiologist and a surgeon talking and looking at us. I was so angry that they wouldn’t come in the room and do something. Surely they knew he was dying right in front of their eyes. I was so angry at them watching me and my baby dying, I laid Pants down in his bed to go out in the hall and hurt them as badly as they were hurting my son.
“The artery in his lungs has collapsed, along with many other vessels. He barely has any blood flow going into his lungs. He needs an angioplasty immediately to open all the vessels back up. The problem is his surgeon is on vacation, out of state and all of our cardiologists are at a convention. I could do the angioplasty, but if anything happened, we would not have the team we would need to save him.” The cardiologist said after he met me in doorway. “He needs to be transferred to another hospital. This hospital has a full pediatric cardiac team. I have already talked to them and they are waiting for him. A helicopter is on it’s way to transfer him there.”
I didn’t know what to say, so many things was going through my mind. I knew of the hospital they were transferring him to. The hospital had a reputation of being the best. If you want saved, you go there. Never in a million years did I think for a moment that they had a children’s hospital. I only thought they saved adults.
I drove up to the hospital, knowing if I went with him, he would die. I told him before they wheeled him out to keep fighting until he saw me again and I knew he would. The waiting cardiac team was not only able to save him that night, but his new surgeon was able to repair his heart completely six weeks later. The surgeon was able to reconstruct his vessels in his lungs using his own heart muscle. It grows along with him. I learned a lot about my son’s condition and the horrible mistakes his former cardiac team had done.
I always hate that Pants had to go through all of that, but I find something beautiful in the timing of it. Crashing at the perfect time where he wouldn’t be opened up again by a surgeon who’s God-Complex prevented him from ceasing his experiments on my baby.
So yes, every thing happens in it’s perfect time. The times where I can not see the answers, I must trust that it will be revealed on it’s own. Miracles happen when they happen, I just need to thankful when they do. And most importantly, if Pants and I could endure that moment in our life and thrive, every thing else is pudding.