Friends Will Be Friends

Mummy's dear friend of 22 years comes personally to celebrate Vera's 2nd birthday belatedly. Check out her creative cake selection.

Good friends are one of life's greatest blessings!

The Air She Breathes

Before/After

This UFO-looking device is the air filter for Vera's BiPAP machine. See how dirty it is after 1 week? Imagine not having this filter and blowing all that pollution into the little girl's airway.

This is how it works.

Air gets sucked into the iSleep25 (machine on the right) and travels through this contraption, removing the dust particles. It then travels through the machine on the left which is a humidifier. This moistens the air before supplying it via the transparent tubing to Vera's mask. Without a humidifier, the constant gush of air for hours will dry out Vera's mucousa. I read that the mucousa - the lining in our nostrils and air passage - is our body's natural protection against respiratory infections.


Air blows into Vera's nostrils, and she as she breathes out, Carbon Dioxide is expelled through the tiny holes in the mask. You can sit near her and enjoy the aircon - the draft is that strong.

What tends to happen during the night is the little girl moves about and the lower flap can cover the nostrils and block her breathing. So mummy is still on standby at night, readjusting the mask when it happens.

All said, this is a great pediatric mask. Unfortunately, the Australian company doesn't make them any bigger. What will happen when Vera outgrows it? I keep thinking. I can only wish Maskmedic would make the next size up in time for Vera when she needs it.

(In MasterCard-speak:)

BiPAP machine: $5,885
Humidifier: $485
Mask: $350
Filters for a year: $260
A good night's sleep for Vera: Priceless

D-I-Y: Homecare

Everything happens for a reason.

Mummy and Daddy were not good at/did not like suctioning: Vera's recent upper respiratory tract infection (URTI) made sure we got over our phobia.

We decided to continue Vera's recovery (6-day course of antibiotics left) at home, because doing shifts at the hospital was just getting too tiring for me.

This means I get all the practice I need at suctioning. Plus I get to rest.

We've established a good routine.

One hour before a feed, we check for signs that Vera needs a suction.

Step 1:
Vera is placed bum higher than head with a towel. This encourages drainage of mucus pretty effectively. Beth does 15 minutes of percussion (repetitive cupping) in this position. Voila, mucus flows out from her nose and mouth even before suctioning.

Step 2:
Beth holds Vera down. Mummy suctions. (I decided against posting a picture because that would be too painful.)

Step 3:
Beth carries Vera and calms her down for her feed.

We'll keep at it and hope she fully recovers by the time she completes the course of antibiotics.

Because early next week, she's up for her 2nd Sleep Study. It's a titration - to find out the optimum levels that she needs for her BiPAP. Which means another hospital stay.

We don't have a choice. We'll have our hands full after the birth, so it's got to be before it.

Hopefully everything goes well. I don't say "as planned", because I know from experience nothing ever goes as planned!

How to Tell It's Time to Suction Your Sick Child

This post is for all the parents who will potentially wonder when is the time to suction their special needs child who's down with a respiratory tract infection.

This is what I have learnt:

SIGNS THAT SUCTIONING NEEDS TO BE DONE ASAP

#1: Child awakens from long sleep and starts to cry/fuss continuously.
It's probably due cos the gunk has been accumulating over the long duration of sleep. And when gunk accumulates it tends to thicken, making it more difficult to remove. Nurses reported daily that the 1st secretions of the morning after Vera awakens is usually very thick and of copious amounts.

#2: Child coughs repeatedly and secretions come out but still cries/fusses.
Her body is trying to expel the gunk but it is building up too fast for her to clear through her own cough reflex. If left to "try to clear it by herself", child will become more and more fatigued by the effort and become weaker. This lowers her immunity and infection may worsen.

#3: Child's breathing sounds "wet".
I asked the physiotherapist what this means. He says to listen out for a throaty, gurgly sound like this:

#4: Using a manual bulb sucker does nothing to ease child's crying/fussing.
This is because the little contraption is no match for the amount of secretions that is filling up the child's airway. It's like drawing water from a flooding river with a bucket.

#5: At the onset of an infection, ie Day 1-2, secretions tend to peak.
This calls for frequent suctioning - which may be as often as 1-2 hourly, dropping in intensity to 3-4 hourly, then 5-6 hourly by Day 5-6.

#6: Good chest percussion technique (up to 15 mins) is required for suctioning effectiveness.
Just like all mothers would know, it's like massaging prioring to expressing breastmilk.

(Parents already expert at suctioning, do share more tips that you know!)

***

Being newbie suctioners, we're not very confident yet cos we didn't get much practice during the last admission. But just seeing Vera inconsolable for hours - no amount of carrying or cajoling worked - and my instincts told me that we were not suctioning frequently enough at the onset of the infection.

Vera is in hospital this time because Ian and I could not agree on when it was time to suction her.

I would press for immediate suctioning. Ian would rather delay it and let her try to get it out herself.

Why?

Because suctioning is extremely uncomfortable for a child. And extremely painful for a parent to watch.

Because she'll cry till she's red in the face, produce more mucus and become even more choked up.

Because she'll struggle, the catheter will rub against the fragile nose and mouth membranes and there will be bleeding. (what parent likes to see a child bleed?)

But I've learnt that, just like tube insertion, it's something that just has to be done. Harden your heart, get set, go.

The consequences of not draining the floodwaters in time?

A mild infection becoming a full-blown one.

With no consensus, I knew I couldn't risk managing her secretions at home alone. Moreover, none of us were well-practised at suctioning.

I knew I couldn't afford it worsening into pneumonia and spend the next 2 weeks in hospital.

Not with the birth so near. Not with my increasingly tired and aching body. Not with my inability to stand or bend over a hospital bed for long.

So mommy hit the "panic" button - even though it was just Day 1 of antibiotics treatment (you're supposed to give it a few days to work) - and rushed Vera to hospital.

I knew the consequences of the decision: The doctors would push to admit her "We don't want her to choke (i.e. aspirate) on her secretions at home". And Vera would have to spend her 2nd birthday in hospital.

As I sang her favourite Baby TV Birthday Song to her today with a surprise cake from NUH, tears welled up in my eyes.

Maybe it's the traumatic memory of her birth 2 years back. Perhaps it's the fact that she was in hospital on my birthday as well. Maybe it's the decorations for her celebration in school, sitting at home. Or just the emotional weight of being 35 weeks pregnant.

But Vera doesn't seem to mind.

She smiles at the song (I've been singing it to her for 2 months until she recognises it now), and I know it was the right decision to bring her in early and nip the bug in the bud.

She is much better now. To all the staff who sang Happy Birthday to Vera, thank you.

2nd Birthday in hospital

Our lil girl was hospitalized last Saturday.

May has been very tired from the long stay at the hospital & her pregnancy so I'm doing a quick post this time just in case some of you are wondering.

During the admission, lung/chest x-ray seems quite ok & blood test didn't detect any bacteria infection. However, we were advised to have her warded for the fever &, mainly, to better manage her secretions to reduce the chances of getting pneumonia like some weeks ago. Other than list of usual medications (smecta, antibiotic, etc), she is on continuous feed & on BiPAP (supplement with O2) most of the day to assist her breathing.

After irritations from a couple of suctioning sessions in the earlier part of yesterday, she slept at 4.30pm & hasn't woken up when I left at 10pm. Looking at the empty cot last night, it took me a while to fell asleep since I didn't get to countdown with Vera to her birthday. My last wishful thoughts were, "Why not I drop-by the hospital in the wee hours of the morning to ... zzz... .". Instead, our helper who is doing the night shift, Beth, would most probably be the first to wish her when she wakes up (.... in the middle of the night?).

Her school teachers were planning to have a small birthday celebration in class today but I guess we'll have to disappoint them this time.

As of last evening, fever is gone & both SpO2 readings & blood CO2 level are ok too without O2 supply. If things are still well & stable today, she might be transferred to normal ward soon. She is currently in PICU High-Dependence because it's apparently the hospital's policy for BiPAP patient. And we are fine with that.

Till I see you back at the hospital after work, "Happy 2nd Birthday, my little Vera!" ... 'cyberly'.

Sick Again

It baffles me how Vera can get sick so suddenly. And so soon after recovering from her pneumonia episode.

She's struggling with her secretions right now, having difficulty coughing them out. Suctioning doesn't seem to draw out much. Maybe I just don't know how to suction efficiently. It doesn't help that she cries blue murder and grits her teeth tenaciously.

Right now, we are just praying we will be able to control it at home with first line antibiotics - a different type this time from Amoxycilin which caused really bad diarrhoea - coupled with suctioning.

If it develops into something more serious (pneumonia again?!?), we may just find ourselves in hospital. On her birthday.

Please no.

I am tired. So is Ian. So is Beth.

Who Wants to Insure These Kids?

A father of a child with special needs wrote to the newspaper today on the issue of medical insurance for children with special needs. Basically, there is none. Apparently, the only way you'd be able to claim insurance for your child who turns out to have special needs is if you had bought his/her hospitalisation policy 2 years before he/she is born. (Now, who would do that?)

Sigh.

The irony is that the children and families that need the most medical expense coverage are the least eligible for it.

Insure all newborns, regardless of health condition
by Simon Pelz

WHEN my wife was expecting our first child, we tried to sign up for an insurance plan for hospitalisation.

But we discovered we had to wait for our child's birth, so insurers could check on our baby's health condition and determine if the risk involved would affect their profitability if they let us sign on.

When our child was unexpectedly born with a minor physical defect, insurers refused to let us take up a hospitalisation plan.

The rejection basically means that parents who plan responsibly for the arrival of their newborn are precluded from medical insurance coverage.

Not only is such a policy unfair to parents and their newborn, but it contradicts the Government's prime aim of arresting Singapore's plunging birth rate by persuading couples to have babies.

Ours, we were told, is not an isolated case and many other parents are in a similar predicament.

Having a sick child without health insurance coverage has a substantial impact on the parents' financial situation, and ultimately becomes a burden to society.

We hope the Government will act to reverse this anti-childbirth policy, so future newborns will be automatically granted health insurance, regardless of their medical condition.

Such a reversal will make Singapore a more childbirth-friendly environment.

Health & Happiness

That's what we wish for you our dear friends and family this Chinese New Year. You could have Luck, Prosperity, or Success...but these are really not that important if you ask me.

Thank you all once again for being part of our journey and sharing our joy.

In Time For Chinese New Year

Shoo off runny poo.

After almost a month of watery stools triggered by antibiotics, we finally get one day without any.

Dr D., Vera's respiratory doc, gave her Smecta - this is supposed to line the bowels with a protective layer, and Lacteol Fort - good bacteria. I know I said these didn't work while she was in hospital, but it's probably because she was still on antibiotics then. Now, they seem to be doing the trick. There's another diarrhoea fighter - Lacteol GG, but Dr D. explained that that was used for prevention and not when it's been prolonged.

So it looks like Vera's all set to celebrate Chinese New Year in 2 days' time. This is usually the event that the Chinese gear up for. But the start of the year has been so eventful that by now, all I feel like doing is holing up and resting (or nesting). I'm definitely getting more tired going into my 34th week. We don't even have anything planned for Vera's 2nd birthday, on the 22nd of February. (Yes she is turning 2!)

But we've already given her the best presents she can have:

Good sleep. Good doctors. Good teachers & therapists. Good caregiver.

January was crazy, but we got so much sorted out medically for Vera that I'm thankful we went through what we did.

What started as a horrible lung infection turned out to be a blessing in disguise.

Still Having The Runs

Something is not right with Vera's digestive tract.

It's been 2 weeks since we've returned from the hospital, yet the diarrhoea hasn't stopped.

Each time she coughs or sneezes, watery poo shoots out like a water gun. It happens after some feeds too.

We haven't changed the milk, nor the amount. Anti-diarrhoea meds like Smecta and good bacteria Lacteol Fort have no effect. Fresh rash is creeping back onto her already scarred bum.

I am at a loss for what to do. We're seeing her doc in 2 days. Hopefully, we can schedule a GI check.

Music Class

Vera went back to school this week. She goes 3 times a week, 2 hours each time. On Monday there's hydrotherapy, Wednesday physiotherapy and music therapy, and occupational therapy and feeding therapy on Friday. She's still adjusting to going back to school, after being used to staying home for so long during the school holidays.

Music therapy is the new addition to her timetable this year. Teacher Jenny exposes them to all sorts of musical instruments - the guitar, a rainstick (above), drums etc. School is so fun for these kids! Music class when I was in school was learning to play the screechy recorder!