Miss Katie was admitted to our state Cardiac service at the New children’s hospital yesterday after we got sent here from the regional hospital.
a lot is going on, we are all still trying to understand this new part of Katie’s CHD journey.
Basically she is having very long runs of rhythms in her heart that are reducing the quality and efficiency of her single ventricle heart.
It has to be addressed and hopefully we get a treatment plan today, but Katie has many tests to navigate today also and they are talking to us about several causes and treatment options depending on the outcome of tests.
Seems only fitting that we are sitting in a hotel in Cairns waiting to see Katie’s cardiologist, being that it’s CHD awareness week!
Miss Katie’s symptoms have got worse this week, headaches, left arm pain, racing heart, vision issues.
A visit to ER on the Cape, this week just confirmed what we already knew. She had to fly to the city for more tests.
So we find ourselves sitting here waiting to see the Dr Monday next week.
It’s raining and the CHD get together planned for tomorrow (day of hearts) has been cancelled and replaced with flood warnings.
Miss Katie is bored and worried…..can’t blame her even shopping for some new clothes proved too much.
Please keep us in your prayers and share Katies story, CHD needs a cure and only awareness & research is going to achieve that!
Our family has been patched together and the results are a beautifully crafted quilt, Parents from different parts of Australia, children from different genetics and nationalities with different abilities and needs, together we are perfectly crafted and beautiful in the eyes of those that see beauty in rare and precious things.
Our son Mr J is no exception, J who has Down syndrome, was brought to us via adoption when he was 6 months old.
Master J was also born with a heart conditions called ASD, VSD and Cleft Mitral valve. These conditions are very often fully correctable by surgery and J had his first surgery prior to us adopting him at 6 months.
Often that is all that is needed as his condition is one of the more commonly seen, it’s also a common defect seen in children with Down syndrome. Sadly though J had some issues that required another open heart surgery at 4 but has since not looked back heart wise.
While CHD is horrible, it isn’t always a life long battle, in well over 50% of cases it can be corrected and those children will likely grow up healthy and strong
J is now 16, he is strong, funny, smart, cheeky and fully of mischief, he is well liked, popular for very often the wrong reasons but usually funny reasons, he loves his fishing, quad biking and Dog Macy like their is no tomorrow. He brings us so many laughs, so much joy and we can’t imagine our life without him.
Down Syndrome & CHD might be his labels to the medical and wider community, but it does not stop him living a full and happy life.
This story is a bit different to many you might read during CHD awareness week, Miss Katie’s story is kinda unique,
It began 16 and half years ago, it was a cool June day, it was the kinda overcast day that makes you want to crawl back into your bed with a good book and hot chocolate, despite this I was on my away to a local hospital.
Several days before my husband and I had been contacted about a little baby that had a complex Heart condition she had been in hospital for many months.
We had been foster cares for just 2 short years but, I was a trained Enrolled Nurse and we had what they needed “experience” with special needs kids.
We agreed to meet her……
As I arrived at the hospital I was met by our foster care agency worker Ali, and Katie’s Primary Cardiologist Dr J.
He looked sceptical even worried. He asked for us to follow him into a conference room, before us many people sat, all ready to tell us the worst possible outcomes that could be her life. I know they only wanted us to know the reality, but if I hadn’t of know better I would have thought they were trying to talk us out of taking her.
Despite this, the meeting with the staff went well. The Meeting was to prepare us for our life ahead with Katie. They informed us of the risks and the possible journey she might have.
The truth is nothing can prepare a family for CHD. The world of CHD is a new scary foreign world, it’s filled with situations that no baby or family should have to endure, with new complicated terms to learn, painful and stressful procedures, high risk surgeries, new challenges to over come, its just a whole new world.
Meeting Katie for the first time was magical………she was just so amazing, so happy and engaging, it was hard to imagine that she was the child that I was just been told may not survive, or at best live a life of life long disability………As I looked down at her over the cold steel bars for her hospital cot, I had NO choice but to take her home….She was so innocent, so fragile but so strong at the same time, how could I even contemplate leaving her, no matter what lay ahead.
It had been made clear to us by DOCS that it was thought that Katie would eventually go home to her first Mumma….She just had to “get her life together” so we just needed to care for her in the mean time……….So for now we just had to love and nurture her.
Katie had many issues. Her health was very fragile and a simple cold had us heading to ER so many times I lost count.
She had so many medications to learn. Her feeding turned into a constant battle of vomits out v’s calories taken in and her other medical issues a constant worry………Life with her was a roller coaster ride, but we adored her, even while we supported the plan to have her returned home we fell more and more deeply in love with her……..
Pretty soon, it sadly became apparent that although her first Mumma loved and adored her, she was not able to meet the requirements of DOCS and after several years DOCS asked us to be Katies long term Guardians.
At that time, here in Australia that didn’t mean we could adopt her……..But it was the next best thing and we became her legal guardians. That somehow seems so clinical, but it’s not. She is every piece our daughter.
I wish I could say that everything was great from then, but CHD could care less how much a child is loved, wanted or how much a child fights. CHD fights back and Katies medical issues continued.
As she grew from a baby, to a toddler, to a pre teen, so did the issues we found.
However, there was joy, oh so much joy, so many firsts we never thought we would see, so many laughs, and not a day goes by in our lives that we do not thank God for her.
While her CHD symptoms started to settle with her new Fontan(the 3 part open heart surgery to give her quality of life) circulation her undiagnosed Genetic syndrome had its way with her, on going feeding issues resulted in two surgeries, the discovery of a Submucosal cleft Palate also needed surgery…….then low density in her bones caused her arm to break when she got hit by a ball, her spine and feet decided not to grow correctly, and then she wouldn’t grow in height, or gain weight and the the list went on and on……but with every new discovery she would prove another prediction wrong
Might not walk – LAUGH AT YOU DR, she ran first,
Might not talk,. Seriously the girl she NEVER stops, she even sings!
Might not do well in school. Hmm she has had her fair share of A’s and is graduating from high school with a Score high enough for Uni this year.
Might not survive to adulthood……when she is 17 so nearly there.
She has had so many medical obstacles, so many issues, and she still does……..But her story is just beginning. She is a fighter….
While the truth is she does have complex CHD – in the shape of HRHS, and we do have to watch her closely, with new issues rising as others resolve, we have just come to know this is the nature of COMPLEX CHD.
It’s the very reason why I feel so passionate about everyone knowing about CHD, knowing and supporting CHD research and families in their communities.
If it wasn’t for the love and support we received in our new CHD Family all those years ago, we wouldn’t of come out as sane as we have (although some days I debate that LOL), if it wasn’t for the wisdom of the families that have gone before us or the Dr’s and nurses that dedicate their lives to kids like Kaite, we wouldn’t of been blessed to parent this amazing child.
Today Katie is doing ‘okay’, you can read about her latest issues here. This CHD journey continues and we are blessed to be celebrating another year with her here & another year raising Awareness.
Katie’s journey into our family was different to the norm, but her CHD story is very typical of children with complex CHD, so if you want to help, here is some of the things you can do.
Support business’s that support CHD. Support Sweet Hearts Day. Support local families in your communities raising funds and awareness, Make a Meal for a family in hospital or a family getting used to life back at home after a long stay in hospital. Support groups like Heartkids Australia or even great services like Breaking Down the barriers for Rural patients who support families from rural areas that find themselves in the big city with sick children and few resources. You could also donate and support the great work of The Fontan for Life campaign that is part of the Fontan Registry research.
ALSO keep your eye open this next week for the local businesses around Australia (and the USA) that are supporting local families and research into CHD.
I have been honored to follow the blog of Nora Rose, a precious baby girl born with a very rare condition, she and her family have been an amazing joy to get to know over the last 2 years, via the amazing blog posts her Mum Aleisa shared with us all via her blog “I will Carry you”
Last week Nora passed from this world to the next surrounded by her loving family, I can’t tell you how much I have enjoyed this precious babies updates, sharing in the joy that was her life.
We will all miss her so dearly, we will miss her Nor Nor updates, the joy and love her family shared with us, the witness they all are.
This was Nora Rose’s Aunties tribute to Nora at her Funeral service, I think its speaks volumes of the joy and love she brought to everyone she touched.