2 years later…

Two years ago, we were sitting in the Pediatric Cardiac Intensive Care Unit watching Laura recuperate from her first Major Cardiac Event (see Laura’s story -Part 5- the darkest hours). My family came to Edmonton to celebrate Thanksgiving with us and we were able to get away just long enough to have a nice meal at our apartment.

Little did we know at that point that within the next week, Laura would undergo a diaphragm plication surgery, go into heart failure, develop chylothorax, be assessed for a heart transplant and receive an Open Heart Surgery which boasted a 25% chance of mortality.

In Laura’s first months of life, she underwent so many surgeries and procedures that her torso looked like it had been used as a pin cushion. Through all that time, though, she remained the happiest little girl you could ever see and she always showed us that she was willing to fight for her life. We were thankful every day for the amazing care she received at the Stollery Children’s Hospital and we were even more thankful that she seemed to pull through anything that hit her.

In Laura’s first 5 months of life, she endured 6 Open Heart Surgeries, 2 other surgeries (both thoracotomies), 18 surgical procedures (including chest closures, broviac lines, sternal cleanouts, being placed on ECMO, etc), 3 Cardiac arrests, 127 minutes of CPR, 2 runs on ECMO, 2 VAD’s, 4 months intubated and at least one stroke (discovered later).

Somehow, this little person who hadn’t even had a chance to live yet, made it through ALL of these things relatively unscathed. How can you be anything other than thankful when you witness these miracles every day?

According to research and the opinions of many: Laura should be developmentally behind, she should be fed through a feeding tube, she should have significant set-backs.

Laura has none of these things.

Laura is on-track in most areas of her development but is quite far advanced in her ability to problem solve (and I’m pretty sure she’s ahead in terms of humour but for some reason they have no scale for that). We are thankful every day that Laura is here with us and that she is doing so well. Yes, she gets on my nerves sometimes – she is 2 after all so she thinks she can do a lot more than she actually can, but the reality is, she could easily have not seen her second birthday (or her first for that matter).

I have been reminded lately that transplant is NOT a cure. It is a treatment which prolongs the life of a critically ill person but it does not leave them healthy. Laura is always at risk of infection, kidney failure, cancer (PTLD), CAV (Cardiac Allograft Vasculopathy) and rejection.

It is more than possible for a child living with a transplant to be fine one moment, and in serious danger the next. One of Laura’s transplant friends is fighting a big battle post-transplant and although I am confident and believe that he will make it through like the champ that he is, it is scary to witness. This complication with this boy has reinforced the importance of all the precautions we take – I will continue to offer (force) fluids constantly throughout the day to protect her kidneys, I will continue to feed Laura a low-sodium/heart healthy diet to protect her gifted heart, I will continue to wipe down shopping carts and anything else that looks yucky and I will certainly continue giving Laura’s meds ON TIME twice a day, every day. I have had medical professionals tell me that I am ridiculous for being so strict about Laura’s med times but if they are not a qualified heart transplant physician – they just don’t get it.

None of these things could have stopped what is happening with my friend’s child, but I know for sure that her “helicopter parenting” (seriously – can we stop saying this?) allowed her to notice the signs IMMEDIATELY and get him seen before his complications became even more severe.

The next time you look at a parent and judge them for this reason or that, try to stop yourself and think about what they might be dealing with. They are using Lysol on the swing at the park? Maybe their child has a compromised immune system. They are letting their kid lick the dirty swing? Good! Their child must be normal and healthy and in the process of developing a killer immune system. You don’t know what battles people are facing so please, try your best to give people the benefit of the doubt and be kind. I struggle with this often but I always try to remember that each family is fighting an invisible battle and they are simply doing the best that they can with what they’ve got.

Happy Thanksgiving 🙂 A little late!