Originally Posted by imthenoni
So glad your Zack is doing so well.
Our little guy's nick name was Buddy. He was born on May 22, 2007. He, as I said, underwent the 2nd surgery and did great. He was discharged from his cardiovascular surgeon a month after his last surgery. His cardiologist saw him every other week for nearly a year and had decided to stretch it to monthly the end of April or 1st week of May. They left his central line (IV sort of) in place after his Feb surgery (2nd heart surgery) because he was to have a spinal cord release in April or May which would also require a sedated MRI of his spine prior to the surgery. In mid April they attempted the MRI but after much medication they found that the central line had come out of place and had to be removed. He had a growth spert and gained 3 lbs - doesn't sound like much but it makes a difference. On May 9, 2007 he passed away. It was not heart related. They believe, as he had just seen his cardiologist & had a 12 lead ECG 2 days before, that he had a blood clot that caused his death. They believe it was from the central line coming out of place but was unforseenable as they had done all tests were done.
So to make this long story short he was just shy of his 1st birthday. By that time he had been under general anesthesia 10 times (8 times for surgeries) and spent 20+ weeks in the hospital, most of which were in PICU. Admittedly we were expecting him to be with us until his late teens to early 20's but we spend every day as if it were our last and loved him 20 years worth. Having said all that we were so blessed to have him as long as we did.
We have friends from the hospital who have children with heart issues who are doing well and you'd never know unless you saw the scars. I wish you years and years of blessings with your little guy.
(((hugs))) Part of me doesn't know what to say! I wish I could say I can't imagine your pain and sorrow. I know the absolute joy and love you felt for Buddy. I know you rejoiced with each milestone and I'm sure fretted with each surgery. I'm so sorry for all the suffering he and his parents had to go through but I know their and your lives are richer for having known him.