Open heart

It never really goes away.

I mean you think it does, you have weeks, months or even a year when the feelings are put aside, the thoughts are out of your head, you live your days as fully as you can without the sense of doom looming over the horizon.

And then in the world of CHARGE, it comes right back and grabs you without mercy by the heart and you feel that tremendous wrench, you're brought right back to where you were 3 years ago.

The thing is, despite 11 surgeries, I say 11 because I stopped counting a while back, more therapy and intervention than I can possibly describe, a hearing aid, glasses for myopia and astigmatism, a feeding tube due to reflux and aspiration at birth and a huge dose of patient good nature and humour, CHARGE is not something you can fix.

* * *

For yesterday's further round of assessments, this time from UCLA's perspective as part of his current developmental plan, Reuben flatly refused to build blocks, count, label colours, draw circles and lines, sign, speak, fix puzzles and he did all this refusing with a wry smile on his face and clear determination. The Drs and his teacher left the room. Reuben checked around the small office to see if anyone was left behind and, safely in the knowledge that indeed everyone had departed, into the adjacent observation room with a one way window, he began to build blocks, count, label colours, draw circles and lines, sign, speak, fix puzzles.

Reuben crazes independence.

What we can also recognise is a degree of cognitive impairment and processing issues, understandable given the different route he has to process things due to sensory impairment (moderate-severe hearing loss, but aided to be normal under perfect conditions which don't exist outside the booth, no sense of smell, visual impairment), he can't go from A to Z directly, but takes the high roads and the low roads as the freeway is just too fast. Yet he's bright at the things we've focused on. Learning a new language effectively from a dictionary, I took to teach him sign language along with me and before he was 2, he count sign the alphabet, recognise letters, numbers, colours, carry with him a huge vocabulary which otherwise would not have been accessible for him. When he was born, the thought of coming to terms with 13 different Drs disciplines was too much, nevermind learning sign which seemed as foreign as Japanese. Yet we broke things up into smaller pieces and in doing so, it all became more palatable.

And after this patient, patient, patient group of long sessions, I take deep breathes all the time, it's a good thing and I slow down my pace, we hastily visited cardiology to seek pre-op authorisation. And thereupon the bombshell fell. It's been determined that Reuben not only needs repair to his subaortic membrane, scar tissue left from his last open heart surgery in August 2007, but will also need surgery on his bicuspic aortic valve, a new diagnosis. Surgery is imminent. If the membrane is left, it could cause further damage to the aortic valve. The case has been forwarded to his surgeon, Dr Starnes, he who performed the original open heart, that experience which has been my worst in life to date. You sit and wait for hours imagining at which point your son's rib cage is being sewn open to access the heart. I can't be any less grotesque than that. If your stomach can take it, this is how Reuben looked post heart bypass. Even back then I took a photo every day and I wanted to record this as the worst moment I ever hoped to experience in life; it would be a benchmark for everything we would achieve together in the future.

As I sit now, I'm very overwhelmed with the thought of this happening again to my son. The risks are staring us in the face. I mostly deal with CHARGE and it's out of my head then something comes along and bulldozers it all and brings it right back.. bitterly cruel. The blessing is that we have the best surgeon to turn to, Dr Starnes, he who balances his fingers as if they were ballerina's legs whilst he heals tiny hearts. The hands of God.

I didn't have the cash to get out of the parking lot, offered my card, but they didn't take cards, didn't have a number for the ATM right now, well, I couldn't hold back my emotions rising. The attendant had me write my name and opened the gate for me to pass through.

The decannulation attempt will still go ahead on Monday-Wednesday. One huge hurdle is overcome, the next is waiting in line.

PS sorry guys I know this is really crappily written. It just came out that way.