Difficult Decisions

Over the past month, Ian and I have had to make some of the toughest decisions as parents.

1. Deciding whether to intubate Vera

When Vera worsened and struggled to breathe, we were suddenly under pressure to decide very quickly if we wanted to intubate her. We knew intubation would be painful (having a tube down your throat all the time, and she'd have to be heavily sedated and on strong painkillers). Seeing her struggle to breathe, our gut feel was to go ahead, and for sure, it was the right decision.

2. Deciding whether to "upgrade" to more powerful Oscillator

When she was intubated and put on the Ventilator, the settings kept increasing to support her. Question was, if we'd reach the max of Ventilator capacity, do we upgrade to the Oscillator? After learning that they would need to paralyse her body in order to put her on the Oscillator, we decided not to.

3. Deciding what to do if she de-sats again

At the maximum settings of the Ventilator, Vera had two episodes where she struggled to keep her oxygen up. Each time, she had to be bagged several rounds to bring her back up. Those were her darkest days. We were asked what we wanted to do if she should de-saturate again and could not be brought back up. Doctors and ourselves were primed for it to happen a third time, but Vera spared us from that agony.

4. Deciding whether to re-intubate her

As the time came to extubate Vera, we were told that there was a possibility that she may struggle to breathe on her own without the tube. In such a case, putting it back in was an option. Re-intubation meant another few weeks of sedation, and subsequent extubation success was also not guaranteed. At such a point, surgery to insert a trach at her throat may have to be the ensuing course of action. We did not want Vera to go from a life of no suctioning when well to suctioning regularly round the clock. We decided against re-intubation.

It meant the stakes were high. She HAD to breathe on her own when off the Ventilator. To give her the best chance, together with the doctors, we tried to prolong the period she was on the Ventilator, to give her enough time to prepare. The trade-off? Very bad withdrawal symptoms later on for being on the sedatives for so much longer.

Going through this life-threatening episode has been a great learning experience for us.

We've experienced first-hand the kinds of treatment and equipment used in life-saving.

It gives us much food for thought: If it were us, how far would we go to save ourselves? If we were so knocked out and can't communicate, would we agree with whatever was done to us? How would we tell our loved ones, that we want to keep fighting or when enough is enough?

Light At The End

Today we see the light at the end of the tunnel.

Vera is once again able to breathe on her regular mask that we use at home.

Now it's mainly to manage her fever (yes still) and residual secretions (which may take another 1-2 weeks of suctioning to clear, so it's still early days to discharge).

It's been a month now for us at the hospital. The longest stretch ever.

Looking back, we have had so much support to tide us through this very intense experience - our families, our friends, the Ronald McDonald House Charities, and most of all the very caring and excellent team of doctors and nurses in NUH PICU.

Thank you all!

Extubating Today

Vera will be taken off the ventilator today. The breathing tube down her throat will be removed and she will have to breathe on her own.

This morning, she started grimacing, from the tube discomfort possibly. We are so happy to see that she is moving her face muscles.

As the pain relief and sedation wears off, she can feel the tube in her throat. I bet she wants it out.

We hope that there are no further complications that can derail her over the next few days.

The House That Supports Us

Having your child warded in an Intensive Care Unit (ICU) is probably one of the most stressful periods in a parent's journey.

If your child needs to be here, it is likely because he or she is seriously ill.

For parents, it's a harrowing roller coaster ride.

One day your child is happy at home, the next moment he or she is admitted to a regular ward.

Suddenly, things escalate and your child struggles to breathe.

Your child is rushed to ICU, and undergoes an emergency procedure to connect them to a ventilator that breathes for them. Heavily sedated, they can't respond to you.

Fear, uncertainty, confusion, gut-wrenching pain - all these emotions hit you all at once. Because you face the real possibility of losing the child you've given life to.

In such a situation, you don't think about leaving your child's side. You'll curl up and sleep fitfully in the chair next to your child. You lose your appetite. And weight. You burn out. You fall sick.

Which is why the first time I stepped into the Ronald McDonald Family Room just outside the NUH ICU, I just sat on the couch and broke down.

After a mad week starting with round-the-clock suctioning at home to Vera landing in the ICU, I was a stressed out ball of nerves. Being welcomed into an inviting family room gave me the much needed regular respite from the battle I was mentally fighting with her in ICU.

My husband Ian and I went on to spend nights sleeping on this couch. One morning, when doctors called to inform us that Vera's condition had suddenly worsened, we could rush to her side in less than a minute.

When doctors prepared us for the worst, we were lucky to be offered a room at the Ronald Mcdonald House.

At our most emotionally trying time, we had a "base camp" to retreat to, food we could help ourselves to and most importantly a bed to get proper sleep. All this at no cost.

It felt like a 'mini holiday' for Ian and I, at a time when we needed it most.

There's even a kid's room, so parents' other children can be kept occupied.

Before staying in the Ronald Macdonald House, I was unaware that there are parents who stay by their young child's side for MONTHS on end - basically living everyday life in a hospital.

Thanks to donors of the Ronald McDonald House Charities, ranging from organisations to individuals, we parents get tangible support for us to soldier on and care for ourselves and our children.

Volunteers, security officers, cleaners help to upkeep the house, much like the work needed to maintain a motel. Funds are needed to repair or replace equipment and facilities, and to stock the kitchen.

Photo from Ronald McDonald House Charities Singapore

So the next time you see this box at the counter when ordering McDonald's, you know your change is going towards supporting families facing their child's medical crisis.

To donate in cash or in kind or volunteer, visit www.rmhc.org.sg or email contact@rmhc.org.sg

To help raise awareness for this meaningful charity, simple share this post.

Safety Stops

Today will be 3 weeks in ICU for Vera. (In her past 8 years, the longest she's ever stayed in ICU is 3 days.)

Her medication dosages have been weaned down further. Ventilator supports have also been reduced progressively to see how she tolerates breathing more on her own.

Meanwhile, she has been treated with anti-fungal for her Urinary Tract Infection (UTI) and antibiotics for secondary lung bacteria infection. Due to the rawness around the central line (neck area), it has been replaced with a PICC, a line through her arm. Secretions from suctioning are clearer and less viscous now.

She's experiencing uncontrollable tremors, mainly in her upper body. Withdrawal from sedatives possibly. She's had a bout of seizures as well. Not surprisingly since her fever has lasted nearly 4 weeks.

Vera is now, in scuba diving terms, at multiple safety stops. Clinging to the anchored rope because currents can be strong and she can be drifted away from where we would like her to be. She's on a slow ascent to let her body get ready for the next crucial hurdle: extubation.

Mummy's Medicine

Vera, this is the only medicine I have for you - all your favourite songs. If you want more song, please breathe on your own soon.

Slowly Resurfacing

Slowly, as the sedation is weaned down, Vera becomes more semi-awake, drifting in and out of sleep state.

She seems aware I'm there.

She seems to know that she has gone through a very difficult experience.

Tears fall frequently.

For a child that's happy all her life and cries in protest only during suctioning and plug setting, this must be a traumatic experience for her. Much so since she has never been so sick before.

Her body is stiff and tense, she's not moved her limbs in 2 weeks. But at least now she has re-surfaced from her deep dive, and we can connect with and comfort her, with singing and massaging.

She's Fighting On

After doctors prepared us for the worst early last week, Vera surprised everyone including her parents with her fighting spirit.

She pulled back from the brink.

This is against the odds, given the severity of the ARDS that had taken over her lungs.

Now that she has stabilised from that ordeal, the aim is to slowly wean her from the drugs (minimise withdrawal symptoms), get her lungs to work more on their own again, and gear her up for extubation (take off the ventilator) in the next week. Need to give her time, as she's been through quite a lot. T18 mums have shared that these kids take their time to recover.

Meanwhile, Vera is facing new infections - a UTI and a secondary bacterial infection. She's still spiking fevers.

Hopefully, with the milk feeding, she'll slowly have more strength to continue the fight.

Time Together

Vera's been in the PICU for more than a week now.

Past several days keeping watch over her feels like I'm making up for the time I've not spent with her.

Playing the music/songs she is familiar with, reminds me of her first year when I temporarily stopped working to care for her full-time, knowing that she could have limited time with us.

Right now, we only hope that she'll remain stable long enough for us to react with the appropriate support she requires.

Doctors With The 3Cs

Why do we travel across the island to the National University Hospital each time Vera needs to be admitted?

Because the NUHkids doctors have the 3Cs.

From the Children's Emergency, to the Pediatric Intensive Care Unit to the general ward 47, these are the 3 things that make NUHkids doctors stand out:

Competence. Compassion. Conversation.

Yes, as parents, knowing your child is in the hands of competent doctors greatly eases your worries.

But beyond brilliance, what we appreciate most is their compassion - the human, unassuming, empathetic way doctors talk about our child. While Vera was in a life-threatening situation, the approach of doctors caring for her was measured and sensitive.

Lastly, conversation is what sets NUHkids doctors apart.

Doctors are extremely busy, and have many urgent cases to attend to at once. But we've never been brushed off or made to feel that we're "taking up their time".

They converse with parents, take each question and explain patiently in detail (some parents like us like to know the medical specifics). Some also show interest in Vera's life and what she can do.

Thank you, doctors of NUHkids. You have made a big difference to how we as parents cope with a child who needs frequent hospital support.

P.S. Thank you to the PICU nurses and therapists too - you are the hard-working hands that heal our kids!

Acute Respiratory Distress Syndrome

From RSV (the virus) developing into pneumonia leading to Acute Respiratory Distress Syndrome or ARDS.

That's what happened to Vera in the whirlwind of the last 2 weeks.

Her lungs were so inflamed they were bleeding for days. (I will never forget the sight of the suction containers filled with bright red fluid.)

Last night, her eyes were closed but when I talked to her, her cheek twitched and then two drops of tears ran down her face.

She must be sad that she can't hug us like she always does. Or just really tired from the traumatic experience.

Family

In our time of difficulty, our family rallied around us.

Caring for Daen, ferrying him to and from school, bringing food and nourishment for us, even staying through the night during Vera's darkest days.

There's a medical team caring for Vera, and a support team caring for her parents.

We are blessed by the outpouring of love.

She Held My Finger

Oh so lightly, but she did today.

Her grip was weak, but her will is strong.

She Blinked Once Today

One precious blink. I saw it. The doctor and nurse saw it.

They were taking a phlegm sample and the doctor said it looks like she's trying to wake up.

Mummy jumped up and called her. And she blinked with her eyes closed.

Our dear Vera, responding the only way she can now.

We're so heartened by that one blink.  Dear Vera, you're still with us.