I have known this would be a possibilty since we received the heart cath results. I have been fighting with myself whether or not we should allow more surgical interventions to be made to her pulmonary arteries when cardiac caths are an option, albeit much slower for the same results. One ballooning would likely not be able to get the results that surgical optimization could get. Meaning our girl would likely be living months and months without the optimized right sided blood flow, in addition to not good left sided flow. Her left sided PAs will not be touched tomorrow. These are too fragile to be messed with at all. They will need to grow and to be slowly ballooned up over time, likely every six months for a few years.
I wish this were more black and white but there are risks to every option. If we wait and choose to only intervene on her right PA with cardiac cath, she may lose function of her kidneys and/or liver. What kind of life would she have with a fragile heart and multiple other dysfunctional vital organs? This is what we must take into consideration.
Since we learned of Avelyn's diagnosis we have had the painful discussions of quality of life vs. quantity of life. For us, quality of life is much more important than the number of days, even though our selfish hearts often lose sight of that. As things currently are, Avelyn's prognosis is still good. She can still live a long relatively healthy life, if we make the right decisions at the right time and always ensure we take steps to optimize her growth and development. Granted she will still need multiple subsequent open heart surgeries to replace her pulmonary valve/conduit as she grows, and she will need cardiac cath interventions to optimize her PAs. But she can recover. She has the potential to do and be whatever she chooses. That's what keeps us going.
Leaving her in her current state jeopardizes her functional independence. I don't want her to be worrying whether she'll need a kidney transplant or dialysis when she should be worrying who will ask her to prom. I don't want her to not be able to grow because her liver can't handle metabolizing proteins.
Our decisions carry serious weight and it's terrifying. Last time we sent her into the OR we nearly lost her. I am physically sick at the thought of sending her back. It would be so much easier not to. However she deserves us to be strong enough to make decisions in her best interests.
I hope and pray we're choosing what's best.
Please keep our sweet baby in your thoughts and prayers. She deserves the best case scenario operation results tomorrow. She so truly does. She is loved dearly and unconditionally.
Thank you for your support, we look forward writing about much happier times and decisions soon.