Saturday, December 18, 2010

Cardiology appointment

A few days ago I got a letter in the mail. It was from the Children's Hospital. For some reason I assumed it was a bill (even though we live in Canada and don't have to pay for anything medically). When I opened it, I discovered instead, that it was an announcement of Puck's next cardiology appointment.

They plan on doing an ECG and an echocardiogram, along with a half hour consult with his cardiologist afterwards. Seeing it all in writing made me gasp out loud. I don't know why it would surprise me. I knew he was having another appointment in early January. But I guess I was expecting a quick 20 minute echo like the last one... To see they are doing it for an hour, with a 20 minute ECG to boot... made my stomach turn.

I guess it really struck me, once again, how serious his heart defect is. I feed him, bathe him, change him, cuddle him, and other than the medicine I give him twice a day and the regimented all seems so typical. I can almost forget how sick he is, and then moments like the letter just hit me extra hard.

I know his two month appointment is very important since heart surgery for this defect is performed between three and six months...but it's hard to imagine getting anything but good news. If we go into that appointment expecting that the holes are growing over only to discover they will be scheduling us for a surgery date...well I don't know how I'm supposed to digest I'm supposed to handle that.

How can anyone expect a mother to deal with handing over their child to a perfect stranger whose job it is to slice said child open, crack their ribs apart, and stop their heart in order to repair the defect. How am I supposed to accept that my child's heart has to stop...that essentially he has to order to save his life.

I just can't prepare myself for the horror of it. I can't believe that he will need surgery because the very thought of hugging and kissing him, and saying goodbye while they wheel him into the OR seems preposterous...torturous. How can I do that? How can I ever let him go knowing there's a chance...however small...that it could be the last time I ever feel his warmth next to mine?

How do I sit there for endless hours wondering if my son is alright? Wondering if there's been complications? Wondering if the surgery will in fact fix him? I know that his defect is notoriously difficult to close. I know that there can be residual holes, and that sometimes a second surgery is needed. I can't imagine ever having to do it once...but twice?

I know I'm getting ahead of myself. I know that January may come and we may get wonderful news. I guess my pessimistic side is trying to caution me, trying to force me to prepare. And yet I know...preparing for something so...unnatural...just isn't possible. So why worry?

Because I'm a mother...because I love him more intensely than my instinctual need to breathe.


Heart Mom said...

Cripes you get deep women!!Your amazing with words thats for sure ;) It is different for everyone,with Pearce I really had no warning from having a healthy baby Friday night to have him flown away only hours later then having his first surgery Sunday morning,I didn't have time to think as I was still adjusting to being a new mom in general.Then his second surgery at 3 months I new was coming but those first 3 months were so blurry with meds around the clock, heparin shots and ped appts 3 times a week.The last one at 9 months was the toughest knowing it was open heart and this was his only chance,if he doesn't get the surgery now he won't live.Now my nerves are at their worst!He is 4,seems healthy to me but I know deep down 2011 will be the year of another open heart and this is the one I am now most scared of ;( .I know his so well now,not to say I didn't love him with all that I am as a new born,at 3 months or at 9 months but he is my world,what I live for,I don't think I could go on if anything ever happened to him now.
Puck will be big and healthy if he needs to have surgery and he will only ever need one surgery ;) He will go for check ups for many years to come but he will still only need one surgery to repair the VSD's.One day soon we will meet and have a good talk ;) Your doing a wonderful job and I can't imagine how you are doing it with 2 more babes at home as well!The boosting,the pumping,the measuring,the medicating,the worrying,etc etc etc......It is beyond exhausting!!!!I wish I could do something for you!!!

carrie said...

You've already done so much. I think about you so often and everything you've had to endure. You are my role model. Between you and Michelle (another heart mom)I have found women who are not only strong enough to deal with the heart problems of their precious kids, but strong enough to dedicate time and energy to answer my questions and offer me support in this journey thats so new and terrifying to me.

I can't imagine what either of you have gone through and are going through. I only know what it's like to feel that fear. That nawing fear of knowing that we have no control over the future of our children, only control over how we deal with it.

Stay strong Dana, and hopefully by the time your son needs his surgery I will be free to offer you the support you have so kindly offered me in whatever way you see fit (from making you dinners to sitting in that waiting room with you) whatever you need girl! I am so indebted to you.


Expat Mom said...

He's such a gorgeous little guy! The surgery is going to be hard on both of you. I've been through three surgeries with my son, but nothing as drastic as what you're going through. It's still heartwrenching to send them off with the nurse, though. I highly recommend something mindless, like knitting, to do while you sit and wait. Somehow it helps even when your brain is racing.

carrie said...

Aw thanks! I think hes pretty darned cute too...but im completely biased! lol.

and I will be sure to bring something with me if h needs surgery! We are still holding out hope that all the holes in his heart will grow over as his heart grows. Theres a 20%- 50% chance that could happen since the holes are in the muscular part of the septum. But if he does need the surgery I will definitely bring something with me to keep myself from going completely insane with worry! Thanks for the suggestion! I guess I will have to learn how to knit LOL.

I hope your son doesn't need anymore surgeries, routine or not. Having a sick child sucks!

Hope you and yours had a great Christmas and has a happy new year!