Friday, April 9, 2010

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.


Anonymous said...

Catherine, I am so sorry you are going through this much right now. Our prayers are with you all. Reu is in our thoughts everyday. Please let us know if you need any help. We are happy to watch Callum while you are busy with Reu - we can come to you so he is comfortable in his own environment. Whatever we can do that will help you. My cell is 818.212.1061. Love and hugs to you, Shannon Segil

Justin and Victoria Nelson said...

Oh Catherine,
I'm in tears right now, knowing what you must be feeling about Reu going back for open heart surgery. It's true. There are so many difficulties (understatement) that come with's gut-wrenching.
We will be in a lot of prayer over this one, my dear friend.
Much love,

JENN said...

Thoughts & Prayers with Lots of Care for you...

Catherine, stay strong and you know you have people who truly cares....



hannah m said...

Oh, sweet friend, I am wrapping you in love, prayer and comfort during what must be such a gut-wrenching time. I am so very sad to read this update. I am also sitting here thinking what an amazing inspiration Reuben has always been to me - yours was one of the first blogs I discovered when CHARGE was first mentioned in regards to Vivian - and your beautiful, brilliant boy inspired hope in me when I needed it - and he continues to inspire me! With so much love and respect for all you're going through...xoxo*hannah

Crystal M. said...

My heart breaks for you reading your post. I know its hard, Eva goes back to cardiology on tuesday and I worry even tho they said everything is fine after the last surgery.
I will keep you and Reuben in my thoughts and prayers.
Crystal and Eva

Kristi said...

Oh Catherine,
First and foremost, I am so, so very sorry to read this update on Reuben's heart. I can only say that, as you well know, I empathize with your mamaheart greatly. I imagine that you are reeling with this new valve development. The blows of things CHARGE related can be many and very heavy. You are in the throws of some very big things right now, but remember, friend, that it's the moments in between all of these kinds of things that define Reuben and yur life with him... not his diagnosis, medical or developmental challenges. He is amazing and no amount of medical or developmental struggles can take that from him... or you.

I am, quite honestly, very surprised that they want to move forward with the decannulation knowing that full open heart surgery is imminent. To have such a big surgery so close to his decannulation is very unusual, as they don't want to traumatize an airway right away.
Gracie developed a subaortic membrane following her first open heart and her third. She has one right now, in fact. But this one is not yet large enough to be interfering with heart function too much. I do remember that the when the first one was removed, it was stressed how delicate it is to remove, which I know we've talked about before.
What is the new issue with his valve?
Sorry so many questions... my head is spinning thinking about all of this for you guys. And I remember those days for us all too well.
I am thinking of you, Jason and Reuben, of course.

As for Reu's evaluation, while I know how frustrating it is to have him not "perform" upon request, I chuckled a bit, too. Gracie is the exact same way. Her teacher and team have learned to evaluate her by allowing her to work independently and in shorter spurts (rather than doing something ten times in a row, she can show that she can do it three times in a row, four different times).
You know how smart and capable Reuben is... he has already surpassed Gracie on so many levels... as has Preston. While I think some of Reuben's behavior is related to his processing and sensory challenges, I also suspect he is being "three." Preston does the exact same thing right now! He protests the things I try and "test" him on and acts like he doesn't know the answer or doesn't know how to do something. He is being "taught" at school how to be evaulated, so that come kindergarten, these evaluations that all kids undergo, is not so foreign. Anyway, I suspect that for Reuben, it is a combination of both... I hope that is a little bit of consolation... just as the fact that he did do the things they asked of him as soon as he thought he wasn't being observed.

Holding you so very close... as always... but extra close now. I know you have a great amount of help, but please don't hesitate to ask if you need anything. Starting Monday, John is off work for 18 days and we are both ready, willing and completely able to help in any way.


Anonymous said...

One day at a time for all things. Tomorrow will take care of itself! 600 photos in a somewhat vacant lot - spectuacular for finding beauty in the ordinary! Peace and prayers,

Billy's Mum said...

As I worry for the hundredth time about William's runny nose and poor sleeping habits I read your blog and count my blessings.

I can't begin to imagine what you must be going through Catherine, but I'm sure you will be strong and carry on being a fantastic mum to your gorgeous boys.

Sending you love and hugs, you are in my thoughts....


Geraldine said...


So sorry about this devastating setback. Just when you're ready to face the hurdle of the trach removal and have all your hopes pinned onthis, something else comes along to set your hopes back.

Keeping you in my thoughts and prayers and will speak to you tonight?
Love Geraldine

Geraldine said...

So sorry about this devastating setback. Just when you're ready to face the hurdle of the trach removal and have all your hopes pinned onthis, something else comes along to set your hopes back.

Keeping you in my thoughts and prayers and will speak to you tonight?
Love Geraldine

Kristi said...

You are all in our thoughts today as you await to find out whether they will move forward with Reu's decannulation.

ellen charge said...

i dotn care how crappy it is to me its amazing all the same glad to see in blip the track thing is doing well