November 6, 2013
Today is the big day! After months of waiting, Tim and I are finally getting the holiday we couldn't have this summer! We fly to NYC today where we will spend four days, and then we get on board a cruise headed to Bahamas (with a stop in Orlando for a theme park - not telling the boys about that one)! I am so excited that I am away as of 3:45! Insanity! (I will not be posting while on holiday)
Quick update. The meeting the other day went very well. I prayed that I would be given understanding and I came out of the meeting having not once bumping into science! :D Instead they actually gave me hope for a better adult care system that may one day be a reality. I can't say much about that now, but I have every intention of writing a post that will be run by them before it's published and then you will get details. All I can say right now is that I have high hopes for the adult system but it will take a lot of work.
The meeting left me with one thing. A goal, direction for my future walk with Congenital Heart Disease/Defects.
I know that a lot of heart parents read this blog and I would like to appeal to you personally in this post. As parents going through this with our kids it's sometimes hard to see past the horror of 'now', we want to help the pediatrics units, we want to give our time and energy to helping make things easier for our kids. All of this is good, and normal. For a moment though, I ask you to think about your son or daughter when they turn 18, and many of them (THANK GOD) will because of the advances in medicine. When they turn 18 two things happen.
1) They start making their own choices medically. We were in the Cardiac Critical Care Unit once when a boy who had just undergone one of many surgeries turned 18. The day after his birthday the doctors told him that he needed yet another open heart surgery. Now that he was 18 he would need to sign consent. He refused. For one thing, he was in a great deal of pain, and the idea of going through more surgery didn't sit well with him, and his lack of maturity and normal belief of any teenager that he was immortal left him not realizing the true gravity of his situation. His mother and father begged him for days to sign the forms and thankfully he finally gave in and had the surgery, but it pointed out a glaring flaw in our laws surrounding pediatric care. 18 years of life, old enough to go to war and make your own medical decisions that mean life or death, but you can't drink and certainly don't have the true maturity to understand the ramifications of your decisions for the longer term. Educating our kids is vital, they need to know that their special heart is always something that requires care, it doesn't end when you leave pediatrics.
2) Once you are 18, out there making your own choices medically you are also sent to a new hospital, a new cardiologist, sometimes not even a specialized cardiologist (and I promise you there is a difference between CHD specialized Cardiologist and regular Cardiologist). They don't know your history, your quirks of health... for example. Joshua's doctor has known him since he was born, she knows every possible thing that has ever happened to him, she knows that his valves tend to reject faster than most, she knows that his circulation is different from most, and she knows that Josh is one of those kids who trends towards the rare side of situations. (If they say 1 in 100, Josh is usually the 1). However, when he is 18 he leaves her care and moves on to a new doctor who may not fully understand him, his problems and his history. They enter, at 18, a system that is underfunded, understaffed, and not yet ready for the influx of survivors that are now leaving pediatrics. This is fact, not a random guess.
As Parents of little heart warriors I believe that we have a responsibility to see that our adult health care is ready for our kids. I believe it's our job to ask questions of the politicians, the doctors, the hospitals as to what is being done to get that adult system ready. I believe we owe these kids, who have struggled through more pain and suffering than they should have, to educate them about their special hearts, to teach them about making these tough decisions in life, and to work towards making sure all the years of care we have given them are not wasted when they leave the children's hospitals/wards.
There are a lot of reasons why people give time and money, particularly to children's charity's, I myself support Sick Kids and Cardiac Kids; kids shouldn't have to suffer, they should be living their lives in innocence of this nasty world for as long as possible so we do what we can to make it easier for them, that's just normal. However, the reality is that as parents we should also look forward, we need to see past this horrible 'now' and see our babies at 18. We need to start now so that when they reach 18 they enter a system that is ready for them.
One last thing for the heart patients and the heart parents reading this. I am working on a new project with the Canadian Congenital Heart Alliance - cchaforlife.org - we are asking that you submit a photo of your CHD survivor holding a sign that says "I am 1 in 100" (much like the one below). We are making a video for giving Tuesday (December) and we are hoping to make it viral for February (big goals I realize). Please send the pictures to me by December 1st! send to: firstname.lastname@example.org
Don't hesitate to contact me if you have any questions, want to help, or need to be connected to organizations in your area. I am here to help as much as I can. (though keep in mind I won't respond until I get back into town.
Many blessings friends, I will see you in two weeks! :D