26 February 2011

Full Face Mask


This gigantic mask is going to be Vera's lifesaver.

It's a full face one, meaning it covers both her mouth and nose. It looks similar to the first one she tried 2 years ago.

Her current mask only covers her nose. For the air pressure to enter her lungs, Vera's mouth has to be closed.

The problem is, Vera sleeps with her mouth open. So whatever air pressure the BiPAP is giving is escaping through her mouth. And because she breathe mostly through her mouth instead of her nose, the machine is not detecting those 'mouth breaths' and mistakenly thinks that she only take very few 'nose breaths'. It therefore does not 'kick in' as much as required, and is under-supporting her.

To illustrate more clearly, previously Vera was taking 30 breaths/min. But the machine was only supporting 10 of those breaths. Now she's taking 34 breaths/min and the machine is supporting 30 of those breaths. It's a closer match.

Finally, ANSWERS to her sleep perspiration and fitful sleep.

It's not the machine, it's the mask!

With the full face mask, her sats improve. It's clear that this is what she needs. Managing the mask - positioning, leakage, dealing with condensation, dry eyes, shifts in position are things we have to readjust to.

But it's Vera who has the most adapting to do. From a weightless silicone mask, she now finds a huge hard plastic THING on her face. She can no longer touch her mouth. She taps the plastic, still trying to figure out what it is.

As there is no full face mask designed for kids (correct me if I'm wrong), we have to look for an adult nasal mask, and hope it fits her nose and mouth. The hospital offered us the one in the picture from Respirionics, but we are searching for others to see what fits Vera best.

New stuff to get used to again. Just when I was looking forward to going back to cruise mode.

Vera, you sure keep us on our toes all the time.

Little D

When Vera was warded for Pneumonia last January, in the bed adjacent to hers was Little D. A puny little girl whom we learnt had problems gaining weight. She was 3 years older than Vera, but smaller than her.

Time time, Vera is warded for Pneumonia again. Coincidentally, in the bed opposite hers is Little D again. Only that she ain't little no more. In just a year, she's overtaken Vera in size. She even has chubby cheeks now. I'm not sure what she's in for, but one thing hasn't changed.

Little D does not have any visitors.

I hear that she has a condition that causes water retention and needs to walk and exercise to help clear the fluids. Without someone around for her, the task falls on the nurses, who are already so busy with their duties.

Over the last 7 days, I've watched her eyelids increasingly swell till they're bulging, threatening to purse her eyes shut.

At first she could still peep through one eye. I brought her a board book. She smiled and flipped the pages delightedly.

Today, she could barely track. So I gave her a tactile musical toy, and she clung to it, pressing the buttons.

The nurses, cleaners, and other parents come to her and do what little they can to engage her. But when all are busy, she slumps in her stroller, the darkness closing in on her.

It makes me so sad. Here we are doing complete 24-hour shifts for Vera, and opposite her is the exact opposite.

WHERE ARE HER NEXT OF KIN? Not a single one? An uncle, aunt, grandparent?

What's the point of doctors and nurses trying so hard to help her, when her loved ones don't even pay a visit?

If they don't come see her quick, I'm afraid she'll soon not be able to see them either.

23 February 2011

The Hospital That Cares

You know your child is with the right hospital when...

1) The Head of Paediatrics squats to explain to you cos you're seated carrying your child.
2) When you say the corridor ceiling light is glaring for your child, they get someone to take a bulb out.
3) Your child gets a cake on their birthday.
4) The doctor tells you what they are doing is only 10% and you are doing 100%.
5) You encounter many conscientious, no-attitude nurses who are serious about their jobs.
6) A nurse suctions your child even though she's knocked off half an hour ago, because you asked.

National University Hospital rocks!

22 February 2011

This Tri-er is Three!


The lovely balloons say it all.

It was a good day - a cake from the hospital, a young doctor drops in to wish her 'Happy Birthday' which was nice, Auntie Jamine and my aunt J and her teachers from school visit.

We are still not on the road to recovery, and just have to be patient and hope for the tide to turn soon.

This evening while I was cradling her, she looked into my eyes and started patting me on the chest. As if saying, 'Good job, Mummy."

What a welcome sign that was after 8 days of rather monotonous nursing care.

Thank you for all the birthday wishes.

Three cheers for you, Vera, for coming this far - hip hip hooray, Hip Hip Hooray, HIP HIP HOORAY!

21 February 2011

Spiking a Fever

What had been a low grade fever for the past few days spiked to 39.8 deg C this evening.

It prompted the medical team to fix a plug on her to administer stronger antibiotics and also to conduct more tests. So far we know it isn't pneumonia, and her blood count is normal. We still do not know what the nature of the infection is.

Meanwhile, there are no smiles and all efforts at cajoling her fail. All she does is writhe in bed or sleep for short periods from sheer tiredness post-suctioning. And poop each time she coughs due to bowel incontinence.

It's unlikely she'll be home for her birthday.

P.S. Just when things were improving for Vera physio-wise, we switch to the opposite direction. One minute up, next minute down. It's hard to prevent my mood from swinging like this Trisomy journey.

19 February 2011

Turning Three...In Hospital


Two days shy of Vera's 3rd Birthday and she's in hospital.

We'd been suctioning at home for 5 days and could not keep up with her secretions. Usually we manage at home if there isn't a fever. But this time there was, so to hospital we go. Just to be safe should things take a turn for the worse.

Her doc said we could bring her in 2 days later if she wasn't any better, but we had to go through emergency. Another round of repeating her story, just to get her warded. And on a Sunday. I thought it's unlikely we'll do any better at home, so we admitted on the spot.

Having Vera in hospital is good. Any changes in her condition and the team can respond with appropriate medication there and then. And her sats are being monitored (we don't have an oximeter at home).

But it is more tiring for all of us. I do 11 hours in the day, Beth does the night shift. With Vera so active and hooked onto the bipap, you just can't leave her unmonitored for long.

And with Diarrhea in full swing now with the start of anti-biotics (okay it's not as bad this time with the new anti-biotic Unasyn we're trying out), but still, enough to make me feel like an automated diaper-changing machine.

Vera is extremely tired from laboured breathing, sleep deprivation, frequent but necessary suctioning, but not tired enough to stop fighting us. I most dislike "hospital duty". I dislike struggling with Vera the entire day. I dislike seeing her bum bleed. I wish someone would take my place. But yet, I know I need to be there to work with the team to get her better fast.

Vera spent her second birthday in hospital. I'm so hoping she'll be home for her third.

15 February 2011

Oral Hygiene: Going Overboard

Once in a while, I get desperate about Vera's oral hygiene. Or lack of it.

There are yellow patches in between her teeth. Plaque. I smell her bad breath and see a yellow-caked tongue. Then I get carried away.

The last time, I whipped out the toothette (oral swab) and started cleaning away. Her secretions increased significantly, a sign of micro-aspiration*. Lots of suctioning ensued.

Yesterday, I whipped out the finger brush and even put toothpaste on it. She must have swallowed the bubbly and micro-aspirated again. She'll be dealing with lots of phlegm in the coming days.

You'd think that I'd learn but I don't know why I don't.

*Micro-aspiration means some fluid gets into the lungs, and this causes more phlegm to be produced by the body.
p.s. Anyone has any ideas? She refuses Spiffies toothwipes, and clamps down on our finger so hard it's painful even if we're wearing the rubbery finger brush.

09 February 2011

Turning Three

In the blink of an eye, Vera will be turning three.

Oh my Three.

As in One, Two, Three Go!

As if, once she hits the mark, there's no stopping her.

Unlike when she turned two, I've been reflecting on her life a lot more this time.

The first year
We were like on a 'Cruise-to-Nowhere'. We didn't know where the destination was. We were mostly alone in our cabin with Vera. She grew amazingly well, never fell sick once, it was good.

The second year
The seas got rough. Vera was in and out of hospital, and we struggled to learn how to cope with her respiratory issues. As the boat rocked, me and my bulging tummy strove to balance between preparing for Daen's birth, and managing Vera. More people come to know about, and love her, and our world expands again. Having Beth to care for her was a blessing.

The third year
Daen comes into our lives and things reorder again. In a happy way. More people come into our lives thanks to him and he had been good for Vera. We are more confident of handling her illnesses with suctioning; she had a minor surgery (adenoids & tonsils) with major improvements to her well-being; with that has come improvements to her physical abilities - sitting, rolling, turning, standing.

As her third year draws to an end, it does seem like we've reached some sort of cruise mode. Daen's now up on his feet and much easier to care for, freeing up therapy time for Vera.

What a journey it has been and will continue to be.

Vera is where she is today because of all the angels sent her way:

The doctors and surgeons - whose deft hands gave her a way to eat, a beautiful smile, better breathing;
Her milk mommies - who spent hours expressing milk for her for months;
Her Mai Mai (aunt) - who looked after her for 3 months after birth;
Her wonderful grandma and greatgrandma and grandaunt - showing that age is just a number when it comes to love;
Her teachers and therapists - who work hard at helping her improve
Her caregiver - who gives up sleep night after night so Vera would get more of it.
Oh, and not forgetting the online angels near and far who have kept us in your prayers - Thank You.

We live in awe every day.

p.s. Till today, we still get comments from new people reading Vera's blog. It always brightens my day to 'meet' new people wanting to learn more about her life. (Of course, our 'old' friends - you know who you are : ) - the ones who never fail to cheer us up with encouraging comments are always treasured!)

08 February 2011

The Less Abled

Some people prefer to, or find it easier, to ignore Vera.

After all, unlike a bouncy, chatty toddler who clambers all over you wanting to play, Vera just well, sits there.

She can't greet you if you don't bother to greet her.

She can't say charming things to illicit exclamations like 'Oh you clever girl!'

And let's face it, she isn't your 'pretty pig-tailed girl'.

All in all, not much incentive to pay her any attention. Why bother talking to her since she won't understand anything you're saying?

Then there are those who are genuinely touched and SEE Vera beyond what she is. They come up to her and talk with a tenderness in their voice.

You can tell so much about a person by how they treat the less abled.

07 February 2011

How Vera Laughs

Can Vera laugh? Yes.

She rarely does, so it's like striking gold. The last time she laughed was 8 months ago. Yes. 8 months.

This is what it sounds like.

video

The little porky responds so spontaneously to social interaction. It is clear that she knows we are trying to reach out to her. It is obvious that she enjoys it. Just like any normal kid.

When she vocalises her delight, she fills my heart with immeasurable joy.

This Trisomy 18 babe whom isn't even supposed to be alive, is sitting here giggling at my antics. The miracle of it isn't lost on me.

She is the one smiling, but we are the ones learning the meaning of true happiness.