Since I put in my first post yesterday, I have been anxious to post again. Writing is cathartic. I figure I'll start off with the various 'stories' that got us here. First off: the how-Charlie-came-to-be-diagnosed story.
Charlie was never a good nurser. For all of my breastfeeding, La Leche League Big Talk before he was born, I was actually releived to get the doctor's go-ahead to start supplementing with formula at 3 1/2 weeks. At that point, we thought Charlie's issues all stemmed from a lack of breast milk production on my part (in hindsight, how Grecian of us to automatically think it's an issue with the mother). I was put on a pill to increase my lactation (a pill that makes you fat and unable to lose weight, by the way!), and we were off to the races. However, Charlie's problems (not wanting to eat, being a bit of a screamer sometimes) didn't resolved. He never seemed truly satisfied. He continued to gain weight, though, and so although we were starting to think something else was wrong, it was deemed 'just the way he is'.
At his four month appointment, Charlie weighed in at 5 ounces less then a week prior. Sensing some cause for concern, our G.P. had us back in two weeks later for another weight in, which was exactly the same. For those of you who don't have kids, this is not normal. Babies want to eat, and babies gain weight hand over fist. Our G.P. then sent us to a pediatric walk-in clinic to have Charlie assessed.
At the walk-in we were paired with Dr. A. (our tough luck, as it turned out). He 'examined' Charlie - listened to his heart for a second or two, didn't undress him, and listened to our story about how Charlie was acting - and diagnosed him with GERD (Gastro Esophagal Reflux Disease). We were prescribed a pill that usually works for kids with this issue.
Obviously, the pill didn't work. We then got a liquid drug. Didn't work (we are now on week 3 with Dr. A.). Then, it was deemed a 'milk allergy' (even though Charlie has NO symptoms of such an allergy) and a hypoallergenic formula was given. Didn't work. ANOTHER brand of hypoallergenic formula was given. See where this is going? Nothing worked. And even though nothing worked, Dr. A. didn't refer us to another doctor until we asked, and told us NOT to go to the hospital because they would just 'turn us away'. Charlie's situation wasn't 'unique enough' for the hospital. And Charlie continuned to just maintain his weight - over the course of 2 months, he gained not one ounce.
Well, 6 in every million turned out to be exactly unique enough for the hospital.
So, one regular Tuesday evening, at the end of our metaphorical ropes, Charlie had a really bad evening. Coughing, shortness of breath, crying, inability lay down...the stuff of nightmares. He was actually so exhausted that he was falling asleep in my arms and waking up to cough. We decided that night that the next morning we would leave early to get to the Hospital for Sick Children and get Charlie looked at.
For those of you who don't know me, I am not one to take bullshit. In hindsight, my mother has said she can't believe it took us as long as it did to get Charlie to Sick Kids. And now, knowing what we know, I find it incredible, too, that we waited as long as we did. Alas, hindsight is 20/20.
Once we got to Sick Kids at 7am, all it took was the emergency department doing a chest x-ray (something we had suggested to Dr. A., but were denied because it would 'expose Charlie to too much radiation' (what?!), and we were literally whisked into the wonderful, comforting arms that is Sick Kids. Blood tests, an IV, an EKG, and an Echo were all given before noon. We were in our room by 3pm, given a tour of the ward, met our Nurse Practitioners (NP) and our cardiologist, and the wonderful nursing staff. We got our diagnosis, we found our what the first course of treatment would be, and our parents came down. We accessed the wifi and emailed/Facebooked all of our friends who, by this point, were worried sick.
Not unique enough, eh?
There were a lot of tears in those first days - shock, disbelief, mourning and uncertainty. For me, it was mostly the uncertainty of what lay ahead - something I still struggle with, albeit less so. I am such a planner! It's not really a gift, after all. We are OK for now though - good days and bad days, taking each day as it comes - and our families and friends have been the greatest support we can imagine.
Today's lyrics are Adele's 'Someone like you', because when Matt was on his way home from the hospital on Day 2 to get us clothes and toiletries, he heard this song and...it was an emotional moment for him. Just because it's sad and talks about losing someone - every time I heard it I think back to those dark first few days. It a romantic song, but some of the lyrics apply:
Someone like you - Adele
I heard that you're settled down
That you found a girl and you're married now
I heard that your dreams came true
Guess she gave you things I didn't give to you
Old friend, why are you so shy?
Ain't like you to hold back or hide from the light
I hate to turn up out of the blue, uninvited
But I couldn't stay away, I couldn't fight it
I had hoped you'd see my face and that you'd be reminded
That for me, it isn't over
Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead
Sometimes it lasts in love, but sometimes it hurts instead
You know how the time flies
Only yesterday was the time of our lives
We were born and raised in a summer haze
Bound by the surprise of our glory days
I hate to turn up out of the blue, uninvited
But I couldn't stay away, I couldn't fight it
I had hoped you'd see my face and that you'd be reminded
That for me, it isn't over yet
Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead, yeah
Nothing compares, no worries or cares
Regrets and mistakes, they're memories made
Who would have known how bittersweet this would taste?
Never mind, I'll find someone like you
I wish nothing but the best for you
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead
Never mind, I'll find someone like you
I wish nothing but the best for you, too
Don't forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead
Sometimes it lasts in love, but sometimes it hurts instead
