Our first hospice visit

For those of you who may not have already seen it, I’ve been blogging about our first visit to the Hummingbird House children’s hospice over on Firefly. You can read the full post here.

Days like these

Most of the time, so long as Miss Z is healthy, life is fairly ordinary. The girls go to school, I go to work, the girls come home from school, I try to wedge more work in between swimming and ballet and therapy, the girls have their bedtime routines and go to bed, QB and I have dinner, watch tv or talk or work, I do Miss Z’s meds and pack Vegemite’s lunch, and go to bed. I suspect we are probably like most other families with young kids – special needs or not.

And then there is the occasional day of high drama. Today was one of those days.

Miss Z had a morning appointment to have her Second Skin body splint fitted. The Second Skin is a postural support that is intended to help correct (although not cure) her worsening scoliosis (curvature of the spine). Unlike her current spinal brace, which is hard plastic, not terribly comfortable, puts pressure on her PEG site and prevents her from sitting properly (a skill we are working very hard on at the moment), the Second Skin splint is more like a corset – a special fabric with boning that is designed to correct her specific spinal curve. It is more comfortable, gives her greater mobility, and doesn’t put pressure on her PEG, which should reduce leakage, granulation and infection. Her Orthopeadic specialist will no doubt despise it as he prefers old school hard spinal braces – side effects be damned – but that is another story for another time…

Anyway, my plan was to drop Vegemite at school and then go on to the Second Skin clinic for Z’s fitting before dropping her at school and heading home to do some work.

Dropping Vegemite was fairly uneventful, but I then made a fatal error. I listened to Google Maps directions instead of my own common sense. The next thing I knew, we were stuck in slow moving traffic – going straight through the city centre. You don’t have to know Brisbane to know that driving through a city centre at rush hour is a BAD IDEA. But by the time I worked out that was where the confident voice of Google Maps was taking me, it was too late.

Inching through traffic, Miss Z started to get grumpy. I’m not sure if she was bored or uncomfortable or could feel the tension in the car rising. First it was just grizzling. Then a bit of ear scratching. And then it descended into full scale wailing while trying to remove her ears with her fingernails.

She was in the back seat, I was in the front seat and we were in the middle of three lanes of traffic. There was nothing I could do, except try to talk her into calming down. Which didn’t work. I tried patting her leg, but the car behind me beeped every time the car in front of me edged forward another two inches and I didn’t immediately move forward, so even leg patting was getting stressful.

Finally, we made it out of the city and onto the motorway, where I hoped the faster movement of the car would soothe Miss Z. It didn’t. She wailed. I struggled to hear the Google directions and realised we were cutting it fine to be at the appointment on time. More stress.

Then we got off the motorway. We were nearly at the clinic. And Miss Z was silent. Success! Until I glanced at her in the mirror and realised she was having a seizure. And there I was, in the car, stuck at a red light in a turn lane exiting the motorway. Nowhere to pull over or stop. Fortunately, the seizure was a short one, so I didn’t have to blockade the exit, but it was followed by her usual postictal response: screaming. Horrible, gut-wrenching, I’m-in-pain screaming. All the way to the clinic.

I hoped she would calm down when I got her out of the car. She didn’t. I hoped we would have a few minutes to collect ourselves and calm down when we got into the clinic. We didn’t, they were immediately ready to see us.

There was nothing to do but soldier on. So, Miss Z screamed while we zipped her into her new suit, screamed while the specialists made sure everything fit as it was supposed to, screamed while they gave me instructions on the splint’s care and use, and screamed while I finished off the paperwork.

At that point, she’d been distraught for a while, so I was hoping the postictal nap, that follows the postictal screaming, was drawing near. There wasn’t really anywhere to give her a cuddle and calm her down at that point – the waiting room at the clinic was small and filled with other kids and it was too hot in the carpark. So, I decided to put Miss Z back in the car and drive her to school.

At this point, you might be thinking I’m insane for even considering taking my child to school after she’s had a seizure and a screaming fit. But if Miss Z stayed home from school every time she had a seizure, she would hardly ever go. Her teachers and teacher aides at the school are all trained in seizure response, and know all about Miss Z’s postictal tears, so to them there is nothing strange about it. Plus, both the teachers and I know that once Miss Z progresses through the tears and a nap, she’ll wake up happy and ready to go.

Still, driving the screaming and scratching Miss Z to school felt like a really stupid thing to do. Especially since by this time, she’d drawn blood by scratching her ears and her hands and face were smeared with red. I finally convinced myself it was the right thing to do simply because the school was closer than home, and we needed to get somewhere as soon as possible.

And so we rolled up at school reception with a bloodied and screaming Miss Z and a completely frazzled me. And neither of the receptionists batted an eyelid at our crazed arrival.

I do love Miss Z’s school.

Miss Z and I sat in reception and calmed down. Miss Z finally got her cuddle – which by that point I needed as much as she did. Her screams turned to cries which turned to grizzles. And then her eyes got a bit heavy.

At that point her favourite aide came around the corner and spotted us. We had a little chat and then I gently transferred Miss Z back into her chair and she was wheeled off to class.

And I was left wondering if 10am was too early for gin.

But I know that when the bus drops her off at 3pm, Miss Z is going to be back to her usual, chilled out self. And I’ll be back to the ordinary working mother of two kids. All dull and ordinary again… at least until our next drama.

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Happier times…

 

 

Learning the Ukulele

I lied, there was one more post I wrote for Firefly in August! And you don’t want to miss this inspirational article about my budding musical career. You can read all about it HERE.

Superstition

The final post I wrote for Firefly on my superstition about saying pretty much anything good about Miss Z. You can read the post HERE.

Boredom is good

I know, I know, it is a bit of a cheat to do this to you, but there are only so many hours in a day… If you want to read more about how Miss Z is bored and I’m thrilled about it, you can read it HERE on the Firefly website.