Tuesday, January 27

BLOOM!

Oh hello. I am in the middle of a sleep deprivation nightmare. Soon to be resolved by a visit to the pediatrician, I hope. I am about to abandon all attempts at creating paragraphs. As I have very important stuff to say, I'm going to switch to point-form now:

1) There exists a wonderful children's rehabilitation hospital in Toronto called Holland-Bloorview.

2) If you are connected to the Holland-Bloorview world, you get to read a magazine called BLOOM. (It's delivered to your door and everything)

3) The BLOOM magazine also has a great website and blog, with resources for special-needs families. You should check it out here.

4)  I wrote a little ditty about our winter quarantine for the blog:

http://bloom-parentingkidswithdisabilities.blogspot.ca/2015/01/why-your-kids-sniffles-make-me-sweat.html

5) I am going to bed now.




To the Mom in the Hospital Waiting Room

Dear Mom Waiting at the Orthopedics Clinic with her Kids,

It was a hot day. And heat means it's going to be a rough day for my son, Branko.  Summertime breathing was a gruelling task due to all the fluid junk in his chest. I showed up in the waiting room, scanning the area for a wall socket that I could plug his portable oxygen concentrator (POC) into. You kindly moved over so I could have a closer seat. I'm going to be honest: sometimes people, even parents of sick kids, don't move over. Thanks for that.

Branko looked terrible that day. In addition to having an oxygen tube and a roaring POC beside him that you never quite get used to the sound of, he had a broken femur. He had broken it the previous week, about a month after his sister was born. We were there to take the soft, temporary cast off, and replace it with a fibreglass one. You didn't notice my daughter at first - she was so tiny back then - and I had tucked her in nice and cozy in the bottom half of our brutally giant double stroller. I may have even run over your foot. Sorry for that.


You didn't flinch at the sight of Branko. Your two kids - a boy and a girl - didn't flinch. I immediately sensed that you didn't feel sorry for us, and I liked that. We started to chat and you explained that your four-year old daughter had broken her elbow a few weeks ago. This was a follow-up appointment to see if the break had healed. Today might be that special day the cast comes off! (spoiler alert: she needed it for a couple more weeks)

As soon as we mentioned the word 'cast', Branko had a meltdown. You see, this was to be Branko's sixth cast. Six. Putting a cast on is terrible. He usually has a panic attack, and it takes at least two people to hold him down. But I was there alone that day, and I was panicked about having to do it all by myself. (As an aside, I did do it. And I rocked.) Both you and your daughter tried to calm Branko down by asking what colour he wanted this new cast to be. It didn't work, but it kept my mind calm for a few moments.

Your daughter's name was called. You wished me luck, and I remember thinking about how nice you and your kids were. But nothing prepared me for what happened 20 minutes later. You had sent your daughter back into the waiting room, to show off her fabulous new purple cast! She went right up to Branko and said, "it doesn't hurt, and I got to pick the colour." I remember thinking I might never get a chance to thank you, to tell you how awesome you and your kids are. If your goal is to raise kind and sensitive children, then feel free to keep up the good work.




Thursday, January 1

My (Partial) Year In Review

I just watched my 'Year In Review' video on Facebook.  I saw the beginnings of eggplant parmesan, which my husband makes for me every time I am significantly passed my due date. I saw the first photo of my beautiful, angry, piglet daughter, born in April. I saw our son recovering from anesthesia after a straightforward, successful, dreamy surgery, in which everything went better than expected.

But there were other events - bad things - that were absent from my video. And this was weird. I haven't been secretive. I have been faithfully using Facebook to keep people up to date, although sometimes with more aloofness than I'd prefer, with what's happening in our lives. Branko, our son, spent most of last year's winter in the hospital for various respiratory infections. Whenever we were discharged, there was hope. We would ooze hope. It felt so wonderful to be allowed to go home. Branko would eat better. He would sleep better, too. I may have even allowed myself to believe I could make him better all by myself, through the power of kale smoothies and chest physiotherapy.  And then, like clockwork, we would need to bring him back to the ER, wearing our patented incredulous smiles as they told us he would be admitted to the ICU. Again.

These winter months culminated in a month-long hospital stay in April. He was very sick, but this time there was no virus. I made them re-swab every orifice on his body, clinging to the fact that if they just found the pesky microbe making him sick, we could fight it and go home. But it wasn't that kind of hospital stay.

Branko's lungs had stopped working properly. In medical terms, it's called 'Respiratory Failure'. We had to quadruple the amount of oxygen he was receiving. That alone shook me. He was young. He was supposed to be requiring less oxygen as he grew. And here I was, sprinting to his oxygen tank and cranking it every time he became upset, or grew pale, or simply told me he wanted 'more oxygen'.

His doctors stopped looking me in the eye. That's when I knew things were bad. They asked to speak with us alone, in a room with extremely uncomfortable chairs. The doctor quickly told us our son had less than two years to live. I still remember exactly how the room felt at that moment: Prickles and clouds, and why is there no air in here? The lights were bright, so I put my head down and clung to my 39-week-sized stomach. But what about CPAP, or BiPAP, or even a tracheostomy? What about his monthly bone treatment? What about growth hormone injections? I just kept spewing everything I had ever absorbed from Grey's Anatomy. The doctor was firm in her belief that while these were all potentially good treatment options, she simply thought none of them would work. Branko's situation was too advanced, too complex. She finished with, 'enjoy the time you have left.' In those five minutes, this doctor took all of our hope, our plans, our lives, and threw it in the trash. I think we left the room right after that.

If I could write a letter to the powers-that-be at Facebook, it would probably go something like this:

To Whom It May Concern: Thanks for jazzing up my year-in-review video. Thanks for letting me feel like I was a normal, regular, ordinary person for about 30 seconds. This past year (as you guys already know, of course) was kind of the worst. I really didn't know what to do with myself for most of it, except for think about what I would do differently if I could go back to that really uncomfortable chair. I know that my hope was very easily erased by one person's opinion. I wish I could give my April-2014-self a big fat head squeeze. I wish I could tell myself that it's perfectly sane, perfectly alright, to be hopeful. To truly believe that the really bad thing you fear most will just simply not happen to you.

Or something like that.

I won't go into the minutiae of our medical journey since then. All we really need to know is that Branko's breathing has improved since he started using a BiPAP machine at night. It really is a marvel of modern science. I sometimes clean it with a soft cloth, and in these moments I know exactly how car enthusiasts feel. He is getting better, and more importantly, I finally have hope.

I've decided to stop asking everyone in my life, especially doctors, to predict the future.  I'm finally more concerned with right now rather than a week from now. Branko is a lottery winner and a science experiment rolled into one complicated package. He's a one of a kind, one in a billion kid. This mystery won't be solved any time soon.