Our day started very early with having to be at the hospital at 6am. We woke Maddox up as we were heading out. He didn't ask about food or drinks, which I was worried would be a problem.
After checking in, we only had to wait a couple minutes before heading back.
They got him settled in the holding room and then gave him the silly juice (liquid Valium). At that time, we got to talk to the anesthesiologist. He was very comforting and helped to put all of us at ease. Maddox was still very nervous, and they decided to give him a little more time for the medicine to sink in. We watched some of Sandlot on thier DVD player, and then it was time for Maddox to go back. The medicine still wasn't really working as much as it should have and he was hesitant to leave. The anesthesiolosist picked him up and carried him back, and Maddox waved to us as he went back.
They wait to do all of the IV's when he is asleep, which I am very thankful for. No pokes until he was under anesthesia.
And then the waiting began. The surgery lasted 6 hours, and the nurse practitioner gave us updates every hour. We were told when he was put on and taken off the heart lung machine. This was one of my biggest concerns, as it can bring many complications. Our Cardiologist came by towards the end and let us know the surgeon was done with his work and that everything looked good. The surgeon came out and talked to us after he was finished. He said everything went as planned, and he was pleased with the outcome. Maddox had a very diseased Aortic Valve, and now he had a new healthy one. They were also able to put a good size Pulmonary Valve in.
About 15 minutes later, they wheeled him from surgery into ICU. We were able to see him long enough to give him a quick kiss as they wheeled him to ICU. I was prepared to see him hooked up to machines and have a beathing tube in. I'd went through the image over and over in my mind, but it was still hard to see. Once they took him to ICU, it took a couple hours to get him all set up. They ended up coming to get me after about an hour and a half becuase he was starting to wake up and needed comforting. I immediately asked to lay in the bed with him and spent most of the next 3 days in that spot.
The first night was pretty hard. He woke up every 30 minutes crying and wanting a drink. They could only give him very little, which didn't help soothe him. We tried the bed and the rocking chair. He was hooked up to so many machines, it was hard to move him much.
The next morning, they started weening him off all of the pain medications. They removed his catheter and wanted him up and going to the bathroom. He wasn't too happy to have to be getting up, but he did. He started to be a little more coherent but still slept most of the day. When he did wake up, he was upset and wanted to drink. They did let him have more to drink, but all liquids were closely monitored and he was only allowed so much. He also got up and walked around the unit 3 seperate times. He got treasure box or a popsicle each time he finished. He was never happy about the walking, and it was pretty much just us forcing him each time.
Due to the medications, He doesn't remember anything from day one or two. He had a drainage tube coming from his chest and his right arm had an arterial line. He was very upset about both of these, but now he has no memory of either.
As for me, I stayed in survival mode. I spent most of my time with Maddox in his bed tending to him. I got very little sleep and barely noticed. The severity of the situation kept me on high alert and gave me energy I shouldn't of had.
We spent 3 days in the CHSU working to get Maddox better. Each day another cord or tube came off, and he was beginning to heal.
Maddox and Emmy were both wanting to see eachother, but Emmy was not allowed back in his room. We facetimed her every night, and they met at the waiting room door to see eachother. It was the sweetest thing to witness thier close relationship.
After only 3 days, we were headed to the step down unit.
We had a goal of being discharged the next day, and I was hesitantly excited. I wanted to go home, but also liked the idea of being so closely monitored.
The night went well, and we were on schedule to be released!
We met Emmy in the pediatric library while they got our discharge paperwork and last labs/x-rays in order.
Before leaving, the doctor came and talked to us. She went over how to care for the incision at home and the importance of his post-op meds. Taking his medicine became a big production and some was getting spit out. Some fluid in his lungs was showing on the x-rays, and we had to be diligent about his diuretics at home.
Early afternoon we were headed home!
We are now at home and getting a little better each day. Maddox is still not eating much and looks so tiny. We are working on small frequent snacks. Today is the first day he's wanted to be up and moving around, and I am hoping his appetite will be slowly increasing as well.
We are grateful this experience had a positive outcome and feel blessed to be home for Christmas.
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