At around 8am, we got the OK to head down to pre-op. My little guy looked so little in the big bed they wheeled him down in.
Steve and I didn't know what to do with ourselves. Nothing felt right. Eating felt wrong, reading felt wrong, sitting and worrying felt wrong, texting friends felt wrong, going on facebook felt wrong, laying down to rest on the bench couch felt wrong. It all was just so wrong.
We got updates throughout the whole 6 hour process. He was prepped for surgery. They opened his chest. He was on bypass. The procedure was done. They were starting his heart. He was off of bypass. They were rewarming him. he would be headed to ICU soon.
Dr. Starnes came to talk to us. The surgery went very well and he was very happy with how things went. The donor valve that was put into Hunter's pulmonary position was bigger than he planned (hopefully allowing more time before it needs to be replaced again) and his own pulmonary valve that was put into the old aortic position went in beautifully. His heart started on it's own after they trialed him off of bypass and he was able to come off successfully. They decided to leave his chest open for a few days because of swelling. I was hoping it would be able to be closed, but this was best. I hadn't looked at post op pictures of babies after heart surgery by choice. I wanted my first experience to be seeing my own son for the first time..... and nothing could have prepared me for this....
As soon as we walked in the room, our nurse Kenny started explaining everything we were seeing to us. He was absolutely amazing. He had just gotten this baby back from surgery and while he had a room full of people helping he took the opportunity to brief us. I will never forget him, I sure hope he is still there for Hunter's next surgery.
We sat back and observed as everyone got Hunter stabilized. Things definitely felt critical but felt controlled. They were on top of it. No one seemed frantic and we were able to relax a bit. Well as much as you can when you are sitting in the CTICU with your freshly out of the OR baby.
At around 4:30pm, Kenny, our nurse went on break. Another nurse was in the room continuing to organize things and keep Hunter stable. The ICU attending doctor was in the room monitoring things and making small talk with Steve when I decided to lay down and try to rest a bit. I heard them discussing how Hunter's arms were twitching. I figured he was just waking up from the anesthesia a bit and it was no big deal. I heard Steve saying that the somantic monitor numbers (infrared sensors that monitored his blood flow to the brain and kidneys) were getting lower. That alerted me to sit up... I couldn't see any of the monitors. Dr. Rambod told Steve he needed to focus for a minute. I saw his face drop as he was watching the monitor. The next thing I knew Dr. R was shouting "epi epi epi!!!" Indicating that he needed the epinephrine shots. My son was going into cardiac arrest and epinephrine is designed to increase the heart rate. Next was the shouting of "press the button! press the button!" meaning press the Code Blue button. This baby was going down and fast.
As the high pitched bell began to ring, Steve told me "let's go". I was so confused. I didn't know what was happening. Now I know that he believed our son was about to die and he didn't want me to watch. He pulled me into the hallway as Dr. Rambod began chest compressions on my 5 week old son.
I've never experienced anything like the next 10 minutes. My eyes started blacking out and I knew I needed to sit down. I started to just sit down on the floor because I knew I was about to pass out and I didn't want any attention on me and I wanted everyone focused on Hunter. Someone slid a chair underneath me and there we were. Sitting in the hallway in the Cardio Thorasic Intensive Care Unit watching an entire room full of doctors and nurses work on our son.
I have a few vivid memories of that time. The first is the dad of the patient next door to us coming out in the hallway to see what was going on. Yes, I am the mom of the little boy whose bell you hear. Yes, my son is knocking on death's door. Yes, I am that mom. I probably would have done the same thing, so I wasn't bothered that he stepped out to look at us. It didn't bother me, just is a vivid picture.
The second is the very tall blond haired surgeon, Dr. Harrington, RUNNING down the hall shouting to get ECMO (full life support) as "this kid has misbehaved twice" (we later found out he gave them a scare on the way back from the OR when he was dropping his blood pressures very low). I think it was then that I had to put my head between my knees or I would have vomited.
The third is the angel of a nurse, Neda, who sat with Steve and I holding our hands repeating over and over and over "he didn't die, he didn't die, he didn't die" Yeah, imagine hearing that about your child. You'd think they would be the most comforting words. Sure they brought hope, but nothing about that situation was comforting.
The fourth was all of a sudden Dr. Starnes was standing in front of us. He told us they thought Hunter had a seizure which sent him into cardiac arrest. They didn't know what caused the seizure and we wouldn't know for many days, but for now he was stable. As quickly as he went down they got him back. He was on a LOT of heart support medications as well as some heavy sedatives to keep him from seizing again. Our little boy was in very critical condition.
The days and, more importantly, hours to come were very touch and go. Usually about 12 hours after surgery they expect a dip in condition. Hunter sailed through that window. He seemed to be doing well.
At around 2 am Steve and I tried to get some rest. The little couch bed in the ICU room only fits one person. Steve let me sleep there. He got so tired that he layed on the floor next to me and fell asleep. Totally not allowed, but after what we had witnessed just hours before, no one was going to make him get up.
We both slept about 4-5 hours that night. It's amazing how you can rest even in a situation like that.
