Surgery day was hard. As hard as I thought it would be. Last night on preop day I managed to get our Christmas tree down and then fell into an exhausted sleep around 9pm. At 5:30am the alarm went off and it was time to drag myself out of bed and start hurriedly getting ready for the day. Since we had fallen asleep so early we had not managed to pack our things nor given Julian a disinfecting bath using special sponges from the hospital. So the first order of business was waking Julian and getting him bathed. Next was packing between mouthfuls of cereal. But after forgetting only a handful of things we were off in record time and headed into Boston by 6:30. On the way in Julian let loose a hacking cough that he had acquired a couple days ago. It sounded as bad as ever. Would he be able to have surgery today?
At admitting we saw a room full of anxious parents clutching their small children and awaiting their turns for vital sign checks. Gretchen popped off to get some breakfast since she did not have a chance to eat before leaving and sure enough, as soon as she stepped out, Julian and I got called in for an initial checkup. The nurses listened to his chest and discussed the raspiness of his lungs, but in the end determined that it was upper respiratory and would not stop the surgery. But then they couldn’t get a good blood saturation level to come through because Julian kept wiggling. He was hungry after not eating since 8pm the night before. I wish I had woken up at 4am and given him some pedialyte. His blood saturation was hovering around 85% and had the nurses concerned. Dad to the rescue. I scooped Julian up and snuggled him into the nook on my neck that he loves so much. Instantly he calmed down and the nurses got an accurate reading of 94%.
After some more waiting we rode the elevator with two other families to the surgical floor. We stepped into the pod 7 holding area on the third floor of Children’s Boston and each family was ushered off into a curtained room. Here we took turns holding Julian and he was a bundle of joy. Waving his arms in the air, cooing and enjoying himself. Nurses discussed the procedures again with us and anesthesiology gave us another review. The best part was that Dr. Emani took the time to come down and speak with us. He did not look tired at all from his work the previous day, but he was all business. He ran through the procedure, which we had already heard many times before, and I suspect he then headed off to prep for surgery. Moments later our time was up. Julian was so well behaved that the nurses decided that he didn’t need to be sedated before leaving us. We bundled him into a warm blanket and he looked back at us with his big eyes and we said goodbye. And just like that the nurse turned around and walked away with him.
The waiting is the worst. I was so stressed. Except for my wife, everything anyone did bothered me. She had learned over the years what to do and say when I get overloaded. Joking about stuff bothered me, talking about the surgery bothered me, asking me if I wanted food bothered me. We walked to a nice waiting area filled with families awaiting the outcomes of their children’s surgeries. Here I sat in my chair and did my Facebook status updates and wrote a couple blog articles on the surgery. The writing filled the timeless void between Julian leaving us and periodic updates we received from the nursing staff. The updates were crucial, critical and so very much appreciated. I can’t imagine agonizing through the entire ordeal without knowing that he had successfully been sedated, successfully incised and moved to a heart lung machine. Each Facebook status update I posted would immediately begin blipping with activity. Words of encouragement and ‘likes’ coming through. I have never been a big Facebook status update person, but this is one case where I loved it. In real time I could see how many people were anxiously awaiting Julian’s progress.
When Dr. Emani finally appeared I didn’t know what to do with myself. Here was the man who had just stitched my son’s heart back together. The news was all good. Julian’s heart was beating on its own, blood flow was great and there were no conduction issues. I don’t even remember what he said. I don’t remember whether I thanked him or not. The whole group of us, Gretchen, my mother, my aunt Carol, my in-laws were all quiet. After Dr. Emani left I hugged Gretchen and both of us kind of fell apart. I was so scared that Julian was going to die. That he would be a still and lifeless corpse on an operating table with his chest cut open wide and a dead heart inside. Without a doubt the worst part was the waiting. Afterwards my emotions flooded out and in their wake I was whole again. Reinvigorated and anxious to see Julian in the recovery room.
The recovery room was not nearly as scary as I thought it would be. You hear that he will be hooked up to a million machines and have tubes coming out of everywhere, and indeed he did. But you don’t care. All you care about is that the surgery was a success and that he is okay and that he will be okay. I took my finger and slid it into the palm of Julian’s one hand that wasn’t covered with iv’s or tubes. I did not expect the cold and lifeless flesh against mine. I reached out with my other hand to stroke his hair and couldn’t help but feel that it would be coarse and hard like straw. But as my fingers ran through his fine silky threads I knew it was him. As his body regained its normal pre-operative temperature his body would regain its vibrance. Julian was on pain medication, sedation medication and paralytic medication. So Julian could not move, theoretically could not feel pain and was asleep. We set up his crib with stuffed animals, blankies and his favorite singing seahorse that lulls him to bed every night. And with that our big day was done. A friend very thoughtfully called Bertucci’s across the street and prepaid for our dinner. All we had to do was show up and the manager came over to make sure it was us. She personally served us our meals (very quickly) and overall it was a great experience.
My brother Terry dropped in to say hi and drop off some things we had forgotten at home. As I explained how great everything was going medically I didn’t even notice that Terry had tears in his eyes until I turned around. I gave him a hug and it dawned on me that after such a big day I failed to realize all the emotion those who love us must have been going through. I had my moment to release all my tensions, to shed tears and to embrace the future, but others who love Julian maybe hadn’t. All those dozens of people sitting around their computer screens hitting the refresh button and anxiously awaiting the next status update must have had a collective sigh of relief and maybe even a shed a few tears when the good news finally came through. Here are those status messages again for all those who anxiously awaited them.
- 7:30 am – Waiting at inpatient admitting. Thank you for all the well wishes everyone!
- 8:30 am – We have moved up to the surgery holding area. Julian is waiting for the sedation team.
- 9:00 am – They took Julian away for the operation a few moments ago. We are now in the family waiting area. We are supposed to get updates from the nurses every ninety minutes or so. There were definitely tears shed as we watched them walk away with Julian bundled up in a warm blanket.
- 10:15 am – The nurse just gave us our first update. Julian has been sedated, had all his lines inserted and had his chest opened. All is well so far.
- 10:45 am – Julian has been successfully moved to a heart lung machine.
- 12:00 pm- Things are progressing. The surgeon is finishing up his work and they will start testing the effectiveness of the repair.
- 12:45 pm – Dr. Emani just came down and let us know that the surgery was a success. Julian’s heart is beating on its own and there are no conduction issues. In the next ninety minutes he will be transferred to ICU where we can see him.