29 May 2012

Very Bad Scoliosis


The news isn't good.

Two years ago, Vera's spine curvature was 25 degrees.

In the X-ray today, it's 60 degrees!

An unmistakable kink jutting out at her lower rib cage.

If the orthopaedic doctor says it is bad, I don't think he is exaggerating.

It's so severe he's suddenly talking about surgery and putting screws in.

I was totally floored by the news. What happened??? How did we go from routine visits that said, "let's keep monitoring" to this?

Was it because I'd skipped too many of her ortho appointments, thinking there'd be not much change?

Okay so, there must be something we can do right?

Wrong. Even if she needs surgery, the surgeon is not able to do it because there is no space to position the screws because of her small size.

Will bracing help? No.

Will lying supine help? No.

So there's nothing we can do to stop the further bending of her spine. It's just part of the physical deterioration process of Trisomy 18.

I left the room in tears.

Such is the journey of Trisomy 18. One moment you are happy that all seems well and stable, and then suddenly something hits you straight between the eyes.

As a mother, my first instinct is to blame myself. How did I let it slip? I've always been the ever vigilant one.

It is a stark reminder to me, that Trisomy 18 will rear its head, no matter how "fine" things are.

Yet there was a silver lining to the day.

Vera has not been taking well to the new Phillips Resperionics Profile Lite Mask that I got for her. Sleeping badly and waking up drowsy. Red mask pressure marks on her nose bridge, mask gel pressing on the side of her eyes.

Desperate for a solution, I called the Respi team at the hospital, and explained the urgency. They immediately tried to find a mask for her. I was so relieved when one fit beautifully! The Phillips Resperionics Comfort Classic M size. It's an old model and thus unavailable from vendors in Singapore. I will have to ship it in from the US. Times like this I REALLY wish I lived there!

I noted though that M was the largest size. So what next, I was already thinking. But we'll cross that bridge another time.

For now, I'm off to make my happiest online purchase ever.

26 May 2012

The Other Blog Member

The other blog member is a quiet one.

He rarely posts. The man of few words is not a talkative sort of guy.

But there's one thing he does.

Ever so often I re-read my posts to find that keywords have links made to previous ones.

Stringing every bit of our journey together across the years.

It's great to have such a blog member for a husband.

22 May 2012

Re-fundo Or No?

I brought Vera back to the surgery team that did her first fundoplication today.

I wanted to know once and for all, if getting a re-fundo would be the best thing to do for her silent reflux.

All in all, there seems to be more cons than pros.

1. There is no guarantee how long the re-fundo will last. (Her first lasted less than a year.)
2. The possibility of keyhole surgery vs open stomach surgery is 50/50.
3. Open stomach surgery recovery is more painful and longer.
4. There is no guarantee that the band will be just right. Too loose and the surgery will have to be repeated to correct it. Too tight and she would not be able to swallow her saliva, leading to pooling at the throat. Surgery would also have to be repeated to correct it.
5. It does not mean that she will not gag on her saliva (which she does frequently now) after a successful re-fundo.

The medical basis for justifying a re-fundo is 1 episode of severe Aspiration Pneumonia involving intubation. Vera has this when she was 2 years old.

She had another episode but did not require intubation, so we'd consider it less severe.

Given the list of negatives, it seems like surgery would be out of the question for now.

The other management options are
1) Continuous feeding. This we are not keen on, given how active Vera's hands are. We'd have to pin her down if it were the case.
2) A Motility medication called Domperidone. Is anyone's kid on this? We are hoping this will help empty her tummy faster as we feed.


19 May 2012

Off Day




Being in an industry notorious for long hours, I am lucky to be able to find a job that gives me the chance to work 4 days a week.

It is amazing what a regular weekday off can do for a mother's well-being.

It makes the whole role of juggling work and family that much more achievable.

You can see it on my face.

I get to spend it with Vera, spend it looking after them if they are sick, spend it on myself or with Ian. It's like someone handing you some cash every week and saying you can do whatever you want with it.

***

We're into the May flu season and we've all been hit to varying degrees. Vera has just come out of it, while Daen is still hacking away. Both have been staying away from school.

In fact, due to the prevalence of Hand, Foot, Mouth Disease, hydrotherapy lessons have been suspended, and that's the highlight of Vera's school activities. Hopefully the coming June holidays will break the spread of the epidemic.

I've been too caught up in work to document Vera's improvements. But I will, promise. Mostly, it's been in the vocalising department. We hear a lot more of her, besides complaining sounds, there are excitement sounds, and yakking sounds. Videos on the way.