About 7:30 that morning, transport came up to retrieve Aiden. I asked if I could walk him down to the OR. That was the longest walk ever! I could only imagine how other moms felt taking their children down. I was silently crying. This could be the last time I held my child and saw his big goofy smile. I didn't want that walk to end. We got on a set of elevators that had two sets of doors. One that opened to the front and into the hall that led the way out of the hospital. The second set of doors opened to the private halls that led to the surgical unit. I didn't like those doors.
Once we got to the pre-op waiting room, I couldn't help but smile. I knew Aiden was in good hands as the walls were covered in Snoopy and Snoopy wouldn't let anything happen to my Aiden.
The anesthesiologist came out to talk to me for a moment, then the surgical nurse came out of those big doors. She wanted to take Aiden out of my arms and he would disappear behind those doors! I didn't want to let him go. I tried to tell myself that he really didn't need the surgery, he was just fine. God made him this way and that was how he was supposed to be. Finally, reason took hold and I hugged and kissed Aiden and told him I would see him in a few hours. I also told him I loved him more than anything.
The nurse said that she would call every 90 minutes and update me on the surgery. I told her I wanted to know everything but one thing. I didn't want to know when Aiden was on bypass. I did NOT want to know when a machine was the only thing keeping my baby alive.
The first call came at 9am. Surgery had began.
At 10:30am the second call came. Everything looked great.
At noon, the third call came. Surgery was still going on.
At 1:30pm, another call. Another echo was being done.
WAIT RIGHT THERE!!! Surgery was supposed to be over with by noon. That is what the surgeon said.
At 4pm, I had not seen my son, received another call, or talked to either of the doctors that were in the OR. I went to a set of doors labled "Surgical Recovery" and opened them. "I either want to see my child or see Dr. Ward or Pastuszko. Something is WRONG!"
A few moments later the nurse calls and said that Dr. Ward was on his way out to the small, private waiting room. Dr Ward sat down in a chair. He said that the two original repairs to the AVSD and the ToF went as planned and everything looked good. Another echo was done and two residual VSDs were seen. So Aiden was placed back on bypass. The first hole was repaired, but due to smallness of Aiden's right ventricle, Aiden's heart was so swollen that Dr Pastuszko could not repair the second hole. The decision was made to let the hole repair itself. When the attempt to take Aiden off of bypass the second time was made, the ventricle had forgotten what it was supposed to do and the heart was not working. Aiden would go to PICU on a portable bypass machine.
I had researched the hypoplastic right/left heart syndrome and I knew that a series of surgeries could be done to bypass the defective ventricle. So I asked about it. Dr. Ward said that children with Down syndrome do not like the surgery and only 1 in 4 survive the surgeries.
Dr. Pastuszko came in about an hour later and we talked about what would be done within the next few days. Aiden would be left on the ECMO to allow for his heart to rest and to let the swelling reside. He said that Aiden was on his way to the PICU and that I could wait there until the nurses called.
When I walked into the PICU room, my baby had more wires, tubes and machines. It was standing room only.
His nurses explained the machines to me and said that at all times, Aiden would have two nurses.
The only thing I could do was cry.
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