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, more therapy and intervention than I can possibly describe, a hearing aid, glasses for myopia and astigmatism, a feeding tube and a huge dose of patient good nature and humour, CHARGE is not something you can fix.

For today'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 it did all this refusing with a wry smile on his face and clear determination. The Drs and his teacher leave the room. Reuben checks around to see if there's anyone left and, safely in the knowledge that everyone has indeed gone, he begins to build blocks, count, label colours, draw circles and lines, sign, speak, fix puzzles.

Perhaps it helps us recognise that an aide at school will not be a good thing. He'd be the kid with a shadow and whilst it's worked for many other children with disabilities and indeed CHARGE syndrome, it doesn't seem to be right for him.

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.. 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.

And after this patient, patient, patient group of long sessions, visited cardio Dr for pre-op authorisation. It's been determined that Reuben not only needs repair to his subaortic membrane left from his 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.

Very overwhelmed with the thought of this happening to my son... 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. 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.

And the best thing I could do when I arrived home was to take Callum out in the Radio Flyer Wagon whilst Reuben was in therapy and spend some time taking photos, well, all 600 of them, in the vacant corner lot that's ladden with wildflowers. 

Slideshow of Callum in the flowers.


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