On December 12 2016 Chloe went in for her final stage of her three stage surgeries. Do not be fooled – this is not a fix! But it certainly means a better quality of life.
We have just started April 2017 and are finally in a position to return to our version of normality. Chloe had her post Fontan review with her cardiologist two weeks ago and he was very happy with the current outcome. Needless to say the visit was quite traumatic.
This means that all extra medications for fluid overload are ceased (which is awesome because Chloe wouldn’t take them anyway) and she continues on with her daily dose of aspirin and new Lisinopril medication. Lisinopril is a medication usually used to help blood pressure, however in children with Fontan or single ventricle hearts it’s often prescribed to help with heart function. That said, there is no definitive evidence that it does actually help when the function was good to start with so our cardiologist was thinking of stopping it. Which would make me very happy. However, he then said ‘let’s not rock the boat’ and we kept her on it. Honestly, giving medications to a child unnecessarily irritates me quite a bit but here we are! I’m not a cardiologist so we stick with it.
The annoyance is not only making Chloe take it, but ordering and picking it up. I can only pick this up from our children’s hospital because I have it compounded privately it will cost over $50. So once a month I need to get it from the hospital (35 minute drive) and her cholesterol is completely the opposite direction and I need that once a month.
Which brings me to the topic of what has happened post Fontan. Chloe is quite traumatised. It took weeks to get her settled in a new kindy so I could return to work. She almost exhibits signs of post traumatic stress. Even her cardiologist noticed her hair thinning at the back which started to happen during our stay in hospital. She won’t sleep alone. She doesn’t like the dark. I can barely move a metre away from her before she begins to get hysterical.
She no longer tolerates drinking pediasure (our go to high calorie formula to help supplement her diet) and therefore hiding medications such as her cholesterol and osmolax are almost impossible. She has stopped eating many of the things that were a preferred food, ‘jagging’ on these during her stay in hospital. Funnily enough though she is an eating machine, mostly consisting of cheese, chicken and bread. Sometimes yogurt (though she’s cautious about this one too as I’ve tried to put her medications in it). I have some ongoing concerns about her intake of nutritionally dense foods and only time will tell how her limited diet takes it toll.
Luckily though she has settled into a new centre and I’ve been able to return to work which I absolutely love. So our crazy version of normality is slowly being restored. Chloe happily goes off into the arms of one particular educator at her new kindy and is now in her age appropriate class! We are thinking about schools but we hold off until 2019. Giving her more time to develop her speech and social communication.
She’s found her true love though. Many days while playing ‘horses’ in hospital we told her that she could go horseriding when she was all better. And horseriding she does! She attends two lessons per week in different places and it’s really her element. Her smile is so big while horseriding! Her dimples are huge! She often says ‘faster faster’ and is developing the skills to stop, turn and make her horse go! I have no idea what it is but she speaks their language! Mike and I are very concerned about how much this passion will end up costing us! But when you find something that lights up her world you have to follow it! Lucky I’ve started working again.
Chloe’s now not blue, I’m not sure I see more energy in her, she’s always been crazy, but she can sustain this for a much longer time. No longer does she get breathless or puffed out. The Fontan really has changed our lives, mostly better, in some ways worse. Only time and lots of reassurance for her can help her gain confidence again.
Chloe's story 