Wednesday, March 10, 2010

The Lucky Ones

When Billy was almost four, he got a stomach bug.

It seemed innocent enough at first. He started vomiting in the evening, and he couldn't stop himself. This is not unusual in Billy (or me), and I was anticipating at the very worst, a trip to the hospital for a drip. On the afternoon of the next day we went to hospital. They sent us home, to watch him for twelve hours. We did, he didn't improve, we went back.

He was admitted to the children's ward of a private hospital in Sydney. They put him on a drip and watched him for another twenty-four hours, then another day, then another. By this stage he was being fed through the drip as well as the straight fluids, as his system just wasn't kicking the bug. There was only the occasional vomit, but he was listless and sad.

On the fourth day, he did a huge wee on the bed. A huge wee. Now, he wasn't fully toilet trained at this stage so we didn't think twice about it. But Natalie, one of the wonderful nurses, did. And we will forever be grateful to her for that.

She immediately asked us to take Billy out of bed, and get him to walk in the hallway. We thought she was a bit crazy. He's sick... why are we making him walk in the hallways? But we did as she asked. He was very weak, so we held his hands and Natalie walked behind us. She asked if Billy always dragged one of his feet as he walked. We said we didn't think so. She swallowed, a big slow swallow... they are not good things to see medical professionals do.

Before we knew it, the paediatrician was called, and they began a series of tests on Billy. Bizarrely, they were checking his reflexes. He had a stomach bug, but they were checking his reflexes... we were very confused.

The doctor told us they suspected either Gullian Barre Syndrome or Transverse Myelitis. Either way, he needed to be transferred to a big public Children's Hospital for further tests. One ambulance ride, a ten hour horror stretch in the ER and an MRI later and the diagnosis was confirmed - Atypical Myelitis.

The world started spinning. Billy lost all reflexes and feeling in his lower body. He couldn't wee, poo or walk. He was admitted to the Neuro Ward of the hospital, where we shared a strange world full of tears and adrenaline and anti-bacterial hand wash with some of the most extraordinary children, parents and nurses you could dream of...

That first night, I saw a Dad in the hallway, as I left the ER to call family. He was standing staring at one of the beautiful artworks that are oddly, incongruously, beautifully displayed all around the children's hospital. He was weeping silently, and turned around as I walked past, revealing his wet face... giving the impression he was well beyond worrying about anyone seeing him cry. He didn't say a word, just held out his hand toward me. I held out my hand, and he tapped it, like a wrestler. 'My turn', he said, and went through the door I had just exited.

Now here's the autistic part of the story. Billy was moved from Recovery after the MRI into a ward. There was a beautiful baby in that first room who had recently had significant surgery on her skull. This tiny child slept fitfully, and cried (naturally) a lot. I'm sure I've mentioned before that the primary challenge autism throws at Billy is hyperacusis. Loud sounds, high frequency sounds, sudden sounds and especially babies crying are all like stab wounds to Billy. So, it's not hard to imagine how he responded, coming out of a general anaesthetic to the sounds of another distressed child.

In the morning, we requested that Billy be moved into a room alone. The response from the Senior Neurologist? 'This isn't the Hilton', she said, 'We don't have single rooms'.

I tried to point out that if he came into the hospital with a wheelchair or a feeding tube, there would be no question his disability wold be respected. But as it turned out they did have single rooms. We found this out when I got the stomach bug that Billy had in the beginning, and we had to be isolated for the protection of the other children in the ward.

Many times during his treatment, neurologists (yes, those doctors that deal with brains) asked why Billy was not answering their questions. They also questioned why he wasn't toilet trained when he was almost four. They told me to 'calm down' when I asked they not yell at him.

It was truly like being in some kind of hell. Because apart from the fact that a third of people who develop Transverse Myelitis (an auto-immune condition related to Multiple Sclerosis) do not survive, we were faced with a number of only slightly less heartening prospects. The prospect of significant ongoing disability. The prospect of dangerous high dose steroid treatment. The fact that we were encouraged strongly to sign a form to acknowledge that there was likely a link to childhood immunisation. The fact that these doctors were acting like they had not seen a lot of autism, despite the size of this hospital. The fact that this environment was not the best, and was still the only option we had in this city.

Billy was given high dose IV infusions of steriods. He was given access to a wheelchair. And slowly, he started to improve.

It took almost two weeks for him to regain use of his legs, and to be able to control his bladder and bowel again. He came home puffed up by steroids, but alive.

And a month or so later, he turned four.

More than two years later, I still relive those weeks in my mind. I look at our quirky, out there, brave little man and I can't believe we actually faced losing him. It really does put things in perspective, as cliched as that sounds.

I still get tied up in knots over hearing the same sequence from Wonder Pets over and over again. I still say 'walk on your feet, not on your toes' ten times a day. I still dream of a dinner table where we all eat the same thing (that isn't in a McDonald's restaurant).

But you know what? He's here.

The tag team Dad lost his daughter. She was three and she had a stroke. She didn't come out of her coma, didn't get distressed by babies cries.

I'll say it again, and I'll always believe it. We are truly the lucky ones.

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