Thursday, June 25, 2015

Gratefulness Vs Discharge guilt

I've been having a rough time of late.

There. I said it.

Um, there was supposed to be a massive weight lifted off my shoulders when I admitted it, wasn't there? Yet here I am, struggling to stand upright under the pressure. The pressure of what, I'm not entirely sure. Motherhood? Life? My white, middle class privilege?

I can pinpoint exactly where it all started. It was in Princess Margaret Hospital with Bobbin and Tricky.

Hospital is never a nice place to be, particularly a childrens' hospital. While it makes the kids better, it seems to simultaneously suck the life out of the parents and school them in how to count your blessings.

We were there for two weeks, which in the scheme of things is such a short time. For an otherwise healthy kid, though, two weeks is forever to be requiring oxygen. Every day they'd come and check her and say "maybe tomorrow", and every day we moved further past our 'estimated date of discharge' written on Bobbin's name board.

It was only on the eleventh day that they decided to refer us to the respiratory team after I'd begged for days to let us go home with an oxygen tank, just so we could get out there. The respiratory doctor came in and took charge, she made a plan of action to start antibiotics for atypical pneumonia, a blood test to confirm, and had a back up plan of a chest CT and bronchioscope if the meds didn't start working (there was a thought that Bobbin had perhaps aspirated some food in to her lungs).


The improvement was noticeable that afternoon and within 24 hours she was able to come off oxygen for the first time in twelve days and we could go home after two weeks. The original medical team came in and APOLOGIZED for not referring us sooner. I couldn't believe it. But it's my child, so of course she was atypical. She even had an atypical presentation of atypical (mycoplasma) pneumonia. No wonder the med team missed it.

So off we went home, and that should have been that. Apart from a residual cough, everything was fine for Bobbin.

But it didn't stop there for me. I can't stop thinking of the other families; the other kids.

Like the gorgeous boy who made Bobbin light up every time he whizzed in to the room on his bright red wheelchair (which was a lot!), who had been in for six months. He was so fun. They played monster trucks together and when Tricky visited, the boys would go off to the play room together for a while. It was a bit confusing for him when Tricky was admitted, but he just saw it as an opportunity to spend more time with fellow car aficionados. Ejected from a car that was crashed by his drunken dad, he has years of rehab in front of him.

Or the sweet girl who was having hundreds of seizures a day thanks to a degenerative disorder. She had lovely get well soon cards from her class at school, flowers, balloons, you name it, to brighten her corner of the ward and make relearning to walk, talk and eat more bearable.

Or the eleven week old boy who was in the cot next to Bobbin with blunt force trauma to the head; two skull fractures; a massive bleed to the brain. The Child Protection Unit coming and going; the wee babe going for all sorts of tests; the parents contacting their lawyer; turning over furniture looking for listening devices.

You can hear absolutely everything going on in the next cot a metre away, those curtains aren't known for their sound deadening properties, after all. The parents talked loudly on the phone to make sure we all heard them, but at one point they whispered to each other. I could still hear them. He was telling her what to say when questioned, that the bleed was caused by his most recent vaccination, that the (new) skull fractures occurred during his birth.

We stayed in a room with them for three days before we were moved for our safety. Part of me wanted to stay in there, writing down everything they said so someone could stand up for this little guy, and another part of me wanted to run as far away as I could, hands over ears, la la la I'm not listening, this doesn't really happen to innocent babes.

But it does. It did. And though this whole experience has made me hold my munchkins tighter, love on them even more, and be eternally grateful for them and their health, it has also crushed a little part of my soul, too. And I'm having a lot of trouble moving past it. I'm hoping that by writing it down; getting it out of my head, that I'll be able to.

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