February 7, 2013
We all know that at some point something is going to wrong with our health, the health of those we love and that someday we will all die. That's a given. What's not a given, or shouldn't be at least, is the thought of it happening to your child. It's always a bigger tragedy if you hear of a child dying, being in a car accident, ski accident, drowning or violence of any kind. Children are sacred to us, we hold onto them, our jobs are to protect them. Just recently the world's heart broke when the news of the terrible tragedy at Sandy Hook elementary spread. Parents around the world who heard the story immediately thought of their own kids, and that night most gave them an extra kiss and a longer hug.
Think about it. For a moment I want you to allow your mind to go there... what if your child got sick? What if they were taken too soon? What would you do? Where would you go? What would your life look like? Most parents don't even entertain those thoughts, most parents don't need to, not even when they hear horrific news about someone else who lost their child. The thoughts are just too terrifying to properly imagine, too horrifying to entertain for any reasonable amount of time. Instead we choose to hug them harder and try to see the blessings rather than than the fear.
I speak about this because I know. I know what it is like to sit in an empty nursery and wonder if there would ever be a baby crying in that crib again. I know because I have had to kiss him on the cheek and say goodbye when they told us there was nothing more they could do. That is what I want to write about today, the fear that comes from an illness like CHD, and the hope that can found there.
Josh's first open heart was not until he was 6 months old, it followed 2 catheter procedures and a stroke. He went into the OR a happy, chubby, sweet little baby boy. He came out scarred, blue and clinging to life. The surgery didn't go as well as they had hoped and actually caused further damage. That was on Monday July 21st 2008, on the Friday morning following his surgery he was totally lifeless, arms and legs were blue and cold and to the naked eye he looked like had already died. I held him as the doctor told us that the only other option was to go in for a second surgery, with tears in her eyes she said "I'm sorry". The reality of it was simple. He was too weak to face another open heart and we both knew it. He was rushed down to the CCCU (Cardiac Critical Care Unit) and we were told he would be prepped for surgery. Hours later, thousands of prayers later, the surgeon came and told us that they just didn't want to go in for more surgery. He was too weak and they didn't think he would survive it. Instead, they wanted to wait, keep him on life support and have the weekend to reconsider their options. To me, it felt like it was answered prayers, like my goodbye might not be a goodbye after all. I think of all the hard weekends I have had in my life and none of them come close to that one. It was like I went to hell for the weekend and was given the grand tour. Every hour felt like a month and every day felt like a year. There were so many scares, so many times when his saturation levels dipped to deadly lows and we again had to prepare our hearts for the worst case scenario. On Monday morning, July 28th, the doctors came to us in the CCCU waiting room and proposed an idea. Instead of surgery they would first try a catheter procedure to place a device in Joshua's heart and repair the damage done during the surgery. While he was in the Cath. Lab they would run a test and if the test worked they wouldn't need to do the surgery. If it failed they would take him straight to the OR. We agreed, signed consent and once again we said goodbye to our little boy. I should tell you that it was the longest wait of our lives but it wasn't. We spent the time praying, and before long the surgeon reappeared. My stomach quivered when I saw him but he smiled at me and I felt peace. The test that day went well, the device was implanted in Joshua's heart and will remain there. We went to see him an hour later in the CCCU and for the first time in his life was pink.
Living with CHD is a day by day sort of life. It forces you to think 'now' and not 'one day' because you really don't know how long you will have. When the doctors tell you that you have 6 more months until the next ECHO you rejoice because you have 6 more months for someone to do more research, to come up with new ways to help, 6 months for funds to be raised, 6 months for people to be trained, it means you have 6 more months with the child you love so much it hurts. This is why I care so much, this is why I clog up twitter and facebook every time Heart month comes along.
I didn't lose my son, every day I thank God for more time with him. I am one of the lucky ones, and that is something else I know. There are many parents who have faced the worst that CHD can do and lost the battle, there are parents even now who work tirelessly to raise awareness, raise funds, change laws so that it what happened to them won't happen to us. I thank God for them and for the little warriors that didn't make it and I pray daily for the survivors, that there will be 6 more months for them too.
The device in Joshua's heart, the one that saved his life that Monday in July 2008; it was only created five short years before. If not for the research being done we wouldn't have Joshua with us today. There is hope, but first MUST come knowledge.