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!
*The Source of this awesome heart can be found by Clicking on it!
I get this Question a bit when people find out that 2 of my kids have Congenital Heart Conditions (CHD). If I was to make a list of Questions that parents of Heart kids where asked the most this was likely to be top of the list, followed closely by “they don’t look sick!” and “are they fixed now?” Most of us more experienced parents of kids with CHD (Congenital Heart Diseases) understand that sadly in our society very little is known about Congenital Heart Disease and even less is known about how they are treated and what our kids and families go though, so we kind of smile sweetly and answer the questions of which we have robotic answers too.
Here is what my kids are dealing with:
Miss CJ was born with Tricuspid Atresia. Now this is where it gets a bit complicated so bare with me, I am going to share what the Dr tell us parents when a Diagnosis is given either at a scan during pregnancy or shortly after birth.
This following extract if from the Royal Melbourne Children’s Cardiology page:
Tricuspid Atresia is – Absence of any connection between the right atrium and the right ventricle leads to blood being diverted from the right atrium to the left atrium. The right ventricle (RV) is usually small (Hypoplastic) Survival depends on an associated VSD (often quite small), in order for blood to reach the lungs, or on the ductus remaining open in the early days of life. Affected infants may be well in the early weeks of life, but gradually become blue, as they get older.
So Basically in layman’s terms Miss CJ has half a heart that functions with only one Ventricle, The Left ventricle. Conditions that cause the Right ventricle to not from correctly or not function correctly often also cause a condition called Hypoplastic Right Heart Syndrome. (HRHS) which is what has happened in Miss CJ’s case.
When our children are born the usual plan for them is a 3 part surgical plan.
Miss CJ has had all the Planned Surgeries, For her that involved a BT Shunt as a Tiny infant, the Hemi Fontan(Glenn) and then at 2 she had the Final part of the Surgeries the Fontan.
Mr. J, was born with AV Canal and Cleft Mitral Valve, both are pretty common heart conditions that children with Down syndrome are born with.
AV Canal is a large defect involving both the atrial (ASD) and the ventricular (VSD) septum’s allows blood to pass freely between the two ventricles and the atriums. The valve apparatus at the junction between atriums and ventricles is “shared” – there being effectively only one valve instead of the normal two. Blood flow and pressure in the lung circulation is substantially increased. This often results in early onset of symptoms with breathlessness, poor feeding and slow weight gain.
He has had 2 heart surgeries, one when he was 4 months old with repaired the AV Canal and Mitral Valve and then another when he was 4 to re-repair the Mitral valve as it had some how re created a Cleft.
Mr. J’s condition is considered Corrected, but he does still have a small leak around the Mitral valve that we need to keep an eye on as he grows into adulthood.
Miss CJ on the other hand, condition is managed rather than corrected. She still see’s her Cardiologist twice a year and has regular Cardiac MRI’s and Echo’s along with ECG’s to check her heart rhythm. The Future Heart wise is not really clear for Miss CJ, we try to not think about it much, and we prefer to live today, enjoy today and plan for a happy future for her.
So there you have it, a little more complicated than just a hole in the heart!
If you know anyone who has a Child with CHD, or is pregnant with a baby with CHD Please make sure they are connected with these great support groups.
Yesterday was Miss CJ’s 6 monthly check up with her Cardiologist the amazing Dr “J”, he has been Miss CJ’s Cardiologist since birth.
The check up went well and Miss CJ is stable but we do need to check on the pressures within her heart. (we have been putting this off for a couple of years) This can only really be done via a Cardiac Catheter in hosptial, so we talked about that and got a tentative booking for Oct 2012.
Miss CJ is not impressed, she really struggles as a 14 year old with having a life restricting heart condition…….who can blame her?, while other girls her age are talking about the latest pop group, or status update on Facebook she is worrying about having a Cardiac procedure.
Some days it just sucks that my child has a complex Congenital Heart Disease………..