Two Is Better Than One

We started 2016 with zero need to suction Vera.

We end 2016 with daily suctioning, 2-3 times a day.

This is our new normal, our new 'well' situation.

Weakened lungs and weaker swallowing ability mean more secretions.

Daddy holds her because she struggles, while mummy suctions. If I had to do it alone, I would have to use my feet as Daddy's hands. Possible, but not easy.

Two is better than one.

Respite Admission

Flu bug. Got Daen. Got Vera. Got me. 

That was 2 weeks ago. We were back to 3 hourly suctioning. Even as I was down, we held out at home for as long as we could. 

We were struggling to keep her oxygen requirements above 90%. We had no nebuliser, no oxygen concentrator, no oximeter. 

We have been resistant to turning Vera's room into a hospital set up, but it seemed inevitable. 

Fellow mummy Samantha was a fairy godmother. In a flash, we borrowed a nebuliser and an oximeter from her. 

I lasted 8 days. On Day 9, my body refused to move and I just lay in bed. 

It was time for respite admission. Luckily there was a bed. 

I do not see it as a weakness that I have failed to take care of Vera at home throughout. I do not feel guilty. 

I think no mum dealing with a child with high medical support needs should feel that they should shoulder all the burden of their sick child. Especially if they still had to work.

I'm glad we're a phone call away from our NUH Homecare nurse, who arranged everything. I could get proper rest (finally!) while knowing she's in good hands. 

I knew that a flu cycle is at least 14 days for Vera and that she was already on the mend when she was admitted. 

We should be bringing her home soon. 

Eye See You

Miss Squinty-small-eyes has new big eyes. All thanks to her new pair of glasses. 

They magnify her eyes big time, because the degree is very high.

After 3 rounds of detailed eye tests, doctors discovered that Vera has severe long-sightedness. Without "lao hua yan" glasses, she's as good as blind. 

No wonder she kept poking her eye - to stimulate her own vision. No wonder she wasn't tracking us. At 700 degrees, everything is a blur.

The eye tests also confirmed, for the first time in 8 years, that the physical connection between her both eyes and brain are normal.

It doesn't not mean however than with these glasses she can suddenly see perfectly. 

Doctors believe there was some brain damage during the serious Pneumonia earlier this year. This could have affected the processing of visual input. 

For now, we can see that she's getting used to "seeing" again, with new eyes. 

Purple Love

Mothers of children with rare conditions coming together as one to sing "Let Love Speak" -
an original song composed by Sally Kwek (on-stage second from left) for inclusion awareness.

Once a year, Singapore comes together at the Purple Parade - to stand side by side in esprit de corp with those with Special Needs. 

I've always been hesitant to bring Vera to crowded places. My paranoia is warranted. One bug caught and to the hospital she goes. And after the scare earlier this year... I've realised over the years that it's just not worth taking the risk. 

Today, I struggled to make a decision, but finally brought her. I joined a group of RDSS mummies and their children who also have rare conditions on stage. Despite some of their children being on breathing machines, needing on-the-spot suctioning, or being prone to sensory over-stimulation, they bravely brought them to the event. 

We all wanted the same thing: To show the world that our children, no matter how weak they may be, how unresponsive they may seem, how dependent they need to be, how different they look from everyone else - their lives matter. We wanted to stand up and be counted with them, and for them.

Together as one, we sang Let Love Speak - an original song by Sally Kwek. Its powerful message: That even though "we may look different", even though "we may not speak the same" as those who are non-verbal or those who have speech difficulties, the best language we CAN use to communicate with them - is LOVE.

After the performance, Vera started to stiffen and her arms started to shiver although it wasn't cold. The booming music, bright lights and loud cheers must have been overwhelming for her. We quickly brought her to somewhere quieter and she knocked out, then woke and kept choking on her increasing secretions. Fingers crossed nothing develops. 

Along the difficult points in my journey with Vera, I've always looked to fellow mums to inspire me to go on. These mothers fight tooth and nail for their special one, they want the world and its unforgiving attitudes to change for their child, they go all out to explore new terrain, to forge new paths for their differently-abled child where there are none. Sally is one such mom.

Thank you for giving us the opportunity to let our children's "voices" be heard. Because many of our children can't speak, we as their parents have to be their voice. We have to take every opportunity to calmly address a stranger's ignorant comment, to be the bridge between our kids and abled ones, to help them realise that EVERYONE is different, just in more or less obvious ways.

Every one of us, dad, mom, sibling of a special child, need to BE THEIR VOICE and believe that our own small encounters can effect little ripples of change that can eventually make a significant difference.

Coming To The Surface

I am rising from my deep dive.

I can feel it.

I've been reading to help myself.

Author Jody Day says in her book "Living the Life Unexpected":

"Being depressed is not necessarily always a problem; it has a valuable part to play in giving us the rest and space we need to reconstruct our identity after losing someone or something very dear to us."

"We reject those who try to cheer us up...we are in a deeper place than that, and we know that's where we need to be."

"The depression that is a part of grief will pass when it has given you the space, rest and introspection you need to move forward with your healing journey."

"Once we begin our grief work, things can begin to shift quite quickly, and you can start moving forward with life again."

"Acceptance is about coming to terms with our destiny and making peace with it. It doesn't mean we like it, or that we think it's fair. It just is what it is."

"Acceptance does not mean that we go quietly. But what it does mean is that the energy that was locked up in our grief becomes available to us again, to dedicate towards a new future."

I took a picture with Vera today. I haven't done so in ages. It's a good sign.

As long as Vera doesn't give up hope, I can't.

Stemming The Downward Spiral

The last 2 months have been rough. Not for Vera, but for me.

It became increasingly clear that she had lost vision and it would now be her new normal.

I was heartbroken.

Since Day One, I'd mentally prepare myself for all kinds of deterioration - lungs, limbs, but never that she would lose the little sight she had left in one eye. She no longer focuses on faces like she did before. We are quite sure she can't see us now, or we're probably blurry shapes.

I was falling apart. I did not feel like doing anything. I'd burst into tears, sitting in the park. Sorry not for myself, but Sorry that this determined little girl would have to start all over. With less faculties.

I reached a point where I would zone out to cope. I stopped caring about Vera, focusing on Daen instead. The little buzzy was what kept me going. I knew I had to stop myself from spirally downwards further.

Ian, dependable as always, stepped in to love and care for Vera when I zoned out.

Then Vera started to improve in her strength. We are seeing her stroke-like hand respond slightly to our daily physiotherapy. She even started to attempt to do her signature crunches!

But the biggest glimmer of hope, was that she still wanted to pull us in for a hug - this time with just one movable arm.

And she actually seems to be in good spirits, despite all that has happened to her body.

How many of us can do the same? As it turns out, her condition, her "unknowing", is her greatest blessing.

How can I give up when Vera is so determined to go on?

And at this bottom of the U curve, her teachers, therapists, doctors and nurses, and friends are there for us. Coming to visit, especially the super- caring Dr W and Nurse E from Nuh Homecare team. I am so grateful.

Like our friend Kenneth says, she's "reset to zero", something our medically fragile kids are prone to.

I've also had to "reset to zero". Perhaps that's what we all need some time in our lives to take stock, to recharge and reflect.

I'm taking it by the day now.

Vera will get better. And so will I.

Smiling A Little

Amidst her drowsy state most of the day, we're beginning to see her smile return like brief sun rays through the clouds.

I'm just so glad to see her smile again.

What Am I?

Someone recently asked me, "How I find the strength to go on? How faith helps me, was I an Atheist."

I'd better find out, I thought.

I googled Atheist: someone who does not believe in the presence of a God. Nope.

Free thinker seemed too broad and unfocused and Humanist seemed too focused on humans.

Then I found this other term; Agnostic (why does it sound like "caustic")

Agnostic: a person who holds the view that any ultimate reality (as God) is unknown and probably unknowable; broadly :  one who is not committed to believing in either the existence or the nonexistence of God or a god

I guess, at least for me, that comes closest to my belief.

Since I do not follow any religion, where do I get the strength to go on for Vera?

I don't know, but these words from philosopher Krishnamurti, though rather deep, ring a bell for me.

J. Krishnamurti, “A New Consciousness” from This Light in Oneself—True Meditation

“One has to be a light to oneself; this light is the law. There is no other law. All the other laws are made by thought and so are fragmentary and contradictory. To be a light to oneself is not to follow the light of another, however reasonable, logical, historical, and however convincing.

You cannot be a light to yourself if you are in the dark shadows of authority, of dogma, of conclusion. Morality is not put together by thought; it is not the outcome of environmental pressure, it is not of yesterday, of tradition.

Freedom is to be a light to oneself; then it not an abstraction, a thing conjured up by thought. Actual freedom is freedom from dependency, attachment, from the craving for experience. Freedom from the very structure of thought is to be a light to oneself. In this light, all action takes place and thus it is never contradictory. Contradiction exists only when the light is separate from the action.

The “ideal,” the “principle,” is the barren movement of thought, and it cannot coexist with this light; one denies the other. Where the observer is, this light, this love, is not. The structure of the observer is put together by thought, which is never new, never free. There is no “how,” no system, no practice. There is only the seeing that is the doing. You have to see, not through the eyes of another. This light, this law, is neither yours nor that of another. There is only light. This is love."

Leona is Four

In the world of Trisomy 18, parents lose their babies in utero, give birth to them stillborn, or lose them days or weeks after birth.

In Trisomy 18 terms, a child who makes it past her first year is a survivor.

Leona has just turned four.

To see that she made it past the initial years and is now thriving (you should see her lotus-root limbs), it's an awesome feeling.

To experience her grabbing fingers, joyful grins and pure gaze is a privilege.

The spirit is strong with this one.

Thrive on, little Lioness!

Wading In The Well

Wading in the well.

That's what I've been doing the last 2 months.

It's quiet, dark and damp.

I wade in endless circles, looking up at the sun that's so near yet so far.

We can't get Vera out of her stuporous state.

The medication for her seizures, they knock her out. She wants to wake, but can't.

Our worst fear is that Vera can't seem to focus. She doesn't look at us now, even up close. We suspect her sight has been affected.

When we call her, she no longer turns towards us. (Is her hearing affected as well?)

Yet, the girl shows signs of life. Her left hand moves with a vengeance - swiping, scratching, it's very much alive. Fighting like a one-arm bandit.

Vera, fight on. We gotta get out of this well.

Nightmares

I had a nightmare about Vera. I was on a motorbike. I rounded a corner and saw her in her pink top and grey shorts faced down on top of another child on the tarmac.

An accident.

Instead of going to her, I swerved away.

Suctioning Seriously Sucks

Warning: This is a ranting post.

I'd never thought I'd rant in a post, but here it is.

Suctioning your own kid sucks.

Sticking a tube down your kid's throat, agitating her to gag and cough sucks. Best part, she resists with all her might and we can't get the secretions out.

Seeing tears from her eyes each session, with no crying sounds, and you're the one causing it. My tears? They drip from my heart.

I'd not expected to suction her for so long after discharge. Discharge right? Well already that's why discharge right?

Wrong.

Full recovery of lungs, will take months. Secretions will therefore take months to clear. I'd been eager to discharge her. In all her past admissions, the need for suctioning at home stopped after a week back home. Things go back to normal.

It's a nightmare this time. It's been 5 weeks I've done this.

For Vera, it's been suctioning every day since mid-March, that's 4 months. For a girl who's never needed suctioning at all when well.

I just want this suctioning nightmare to end.

At My Lowest Point

2 weeks ago I hit rock bottom.

Suctioning frequency increased, requiring waking up in the middle of the night every night. This is coming home following 2 intense months of near-death hospital drama.

It reached a point I wanted to send Vera away - back to the hospital. "No coming home until suctioning zero and back to normal sleep hours." I thought to myself. (I had started suctioning in March. It is June and I am still suctioning.)

The only problem was, sending her back to hospital would just expose her to infection again.

Here I am, stuck in a situation I can't change that's wreaking havoc on all of us.

Even Daen has wised up. He came into the room once and saw me tending to his sister and said, "Oh, not available" and walked away.

In the good times of the past, we had much more time together.

He's used to the busyness of suctioning Vera in the morning by now. As a result, he readies himself for school with less prodding - less attention, more independent.

Vera's still not back to normal hours. Until she does, our lives can't really go back to normal.

US Time Girl

Vera came back from hospital on US time zone. The no-day-no-night of hospital wards altered her circadian rhythm. When we wake up at 8am she'll fall asleep. She'll wake at 6pm.

We took turns to stay up with her through the night and it was terrible for us.

I refuse to follow her time. She's got to follow us instead. Now I just let her be at night while we sleep. I wake occasionally to check. And yes, we've resorted to help from sedatives.

I'm banking on Mr Sun to work his magic, so working in as much sun time as possible.

Vera's lost all her usual movements except for one arm. But I can't dwell on that right now. Gotta get her back to Singapore time first.

Suctioning is still on going with no end in sight. I'm hoping Mr Sun will dry up her lungs too.

The Spider's Web Undone

Right now I feel just like a spider. A spider that has spent so much effort artfully weaving its fine, intricate web, only to have the rain come and destroy the whole web.

Vera has lost so much of what she could do before this illness.

She's basically like a baby again. All the YEARS of effort - from her many teachers, ourselves and most of all Vera herself - gone down the drain after the hurricane came and went.

Yes yes, well meaning friends tell me she'll get better and be back to her normal self. Who really knows? I don't. All I know now is the PAIN of seeing Vera lose so much function. The HEARTACHE of no more scooting around, head control, sitting by herself, infectious smiles and generous hugs.

Yes yes she's out of danger, we're lucky she's still with us...but now's the time I'm really reeling from the aftermath. I MISS THE OLD VERA SO MUCH. And I need the space and time to get used to the new Vera.

Of course I'm going to try my best to help her regain whatever she used to have.

But right now, I wish I had the spider's non-human ability to just build its web over and over again each time it's destroyed, as if that were what it was born to do.

Mummy Falls Sick

And as so many times in the past, I fall sick once Vera is back home from the hospital.

Well, this is the 4th time I'm sick since she fell sick. My body just can't take the stress.

Caring for a sick child is hard when your sick yourself. Waking up in the night to do suctioning, is becoming harder as the years go by.

Hopefully things will become more manageable when I recover.

Day 2 Back Home

Vera was discharged from the hospital on Friday.

We had been there 4 weeks in PICU, 3 weeks in High Dependency.

While we are so relieved the daily hospital visits have ended, the journey to full recovery has just begun.

Her caregiver and I have to continue suctioning round the clock, as the secretions will not be completely gone for a while.

Vera's different than before. If you've seen how active she is, the change is evident.

As of Day 2:

Head control: poor
L hand: moving slightly like before
R hand: not moving much
L leg: slightly moving
R leg: not moving much
Sitting up: no
Signature smile: no
Remarks: grimacing at times

I've been on unpaid leave - thanks to my very kind boss - since Vera was hospitalised.

While I wish she could bounce back to her normal self and life can resume as normal, it's not going happen.

She shows signs that she's trying, so hopefully with time she can regain whatever function she used to have.

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.

Daen Makes A Card

Not Out of The Woods

After the intubation in the wee hours last Saturday the doc told us, if we had not intubated at that point, we would have lost Vera right there shortly.

Now, we'd given her a fighting chance. We were told however, to expect that Vera would get worse before getting better.

The next 48 hours would be the eye of the storm.

On Sunday morning, at 730am, I got a call from the ICU. Vera had desaturated and they were bagging her, but unable to bring her back up.

Ian and I had been sleeping in the Ronald MacDonald Family Room on the couch overnight, and we rushed back to the ICU which was just next to it.

We entered the room when they had just bagged her 3 times. Miraculously, Vera eyes were open (likely due to the stimulus of the bagging). She looked at me, and gave a smile. Not a big one, with the tube in her mouth, but she smiled. Then looked around unfocused then closed her eyes again.

She stabilised after another round of bagging. We were shaken. So this was what they meant by it going to get worse first.

We went on to have another such episode. Daddy was alone with her (I'd fallen sick and was home resting).

I rushed down and we're staying put at the hospital from now on. (Two is always better than one.) Bless the Ronald MacDonald charity for giving us a room in the Ronald MacDonald House, so we could rest properly every night. It's truly a haven that gives much needed respite for worn and weary parents of kids in ICU.

Dear girl is still fighting. We know cos she had a fever last night.

She's not out of the woods yet.

Unchartered Waters

The Trisomy 18 handbook for families says:

"The length of time you will have with your child will be, in large part, dependent on the life-threatening conditions your child experiences."

Given that Vera does not have any heart conditions, we have had a good 8 years with her so far, a miracle in itself.

Which is why this infection caught us totally off guard.

We have gotten used to her bi-yearly hospital admissions, usually for an Upper Respiratory Tract Infection, or Gastroenteritis. She'd usually ride it out in the normal ward, then return home in about a week.

We thought this time would be no different.

As it turns out, we were actually heading into a hurricane.

The telltale signs were there.

Her caregiver had mentioned a week of fitful sleep in the days leading up to the onset. Unusual, as Vera now sleeps well on normal days.

Then the during the first 2 days, it seemed strange that I'd suction but little phlegm was produced. Normally, thick green mucus would come out on the first day, a good sign she's able to clear.

On Day 3, she seemed unable to settle. And on Day 4, when I looked at her tummy, was when worry set in. It was heaving in and out, something we've only seen once before when Vera was 2 - and that led to Pneumonia.

Dr M listened to her lungs, and said it had clearly progressed. (I think they use that term instead of 'worsened' so as not to alarm parents.)

Vera was promptly moved to High Dependency. Strangely, no chesty phelgm sounds on the entire Day 4, not good cos we need the bad stuff to keep coming out.

By night of Day 4, she was breathing laboriously, even on the bipap.

Within the day, we'd gone from expecting a recovering Vera to being faced with the decision to intubate her.

I hesitated, knowing Vera is difficult to intubate and that it would be painful and she's need morphine and  sedation. But looking at her struggling to breathe, I changed my mind. No parent wants to see a child struggling to breathe. Doctors went ahead, while we assured each other and ourselves that we'd made the right decision.

Dr S said later on, that given the strength and weight that Vera has built up over the years, we should take heart that she's in the best possible state health-wise to fight such battle.

I gave Vera my index finger and she clasped it unusually tight. She looked at me and I sensed her fear.

I whispered to her that they were going to do something, and asked her to be a brave girl. They rushed her into ICU to be intubated and to set a central line.

For the first time since her birth, we experienced an emergency intubation, instead of the elective ones for surgery while she's well.

We were wading into unchartered waters.

RSV

In severe cases

Respiratory syncytial virus can lead to a lower respiratory tract illness such as pneumonia or bronchiolitis — an inflammation of the small airway passages entering the lungs. Signs and symptoms may include:

Fever
Severe cough
Wheezing — a high-pitched noise that's usually heard on breathing out (exhaling)
Rapid breathing or difficulty breathing, which may make the child prefer to sit up rather than lie down

So now we know. I was puzzled why Vera kept trying to sit up in bed before she worsened and had to be intubated.

RSV is highly contagious. Which probably explains why I'm sick now, having been suctioning Vera during the onset of the virus.

In adults, RSV can be just sore throat, cold, copious amounts of mucus , and symptoms usually show up 4-6 days after exposure.

She's On A Deep Dive

Intubated and on a ventilator, Vera looks like she's geared up for scuba diving, but with much higher pressure setting than typical diving.

With sedation, it's like she has descended to so great a depth that we no longer can see each other. We now gauge vitals on the machine readings by the amount, quality and frequency of the bubbles rising to the surface. Her brain might not make total sense of the sounds around her, but she is able to hear our voices, mummy's singing and the familiar music we're playing. Like in diving, we can still hear sounds through water.

We hope that she can find her way around in this seemingly ultra-long deep dive.

Vera girl, 

Don't flip too hard when you go round chasing after the squids; you need to conserve your energy and refrain from further stressing your heart. 

Don't swim against the  undercurrents that are too strong; just stay low or hang onto something and wait it out since your lungs are still badly infected. 

Don't explore too deep into the cave; we don't want you get lost in it and run out of air. 

Don't spend too long at the deeper end and do constantly check your nitrogen levels; your limbs are already very cold and it will take you longer to surface to see us again.

- by Ian

Intubated

Shifted Vera to ICU on Friday. Her breathing was so laboured that we have decided to have her intubated and put on a ventilator. I've not seen her working so hard.

Tests showed that it's RSV - a virus - which means there's no antibiotics for it.

Her oxygen saturation went low this morning and needed 4 rounds of bagging to get her back.

Now, with higher ventilator setting@30cmH2O and increased NO@15ppm, her Sat is only at around 88.. . . .

Annual Visit

Vera averages 2 hospital stays a year.

Usually one at the start of the year, the other between August to September.

So here we are. High fever and lung infection. Xray shows patches in both sides of the lungs. Last August, we held out with her at home for 5 days before bringing her to the hospital.

This time, it's the 3rd day, but since we're going into a holiday weekend, I didn't want to wait. Plus her caregiver and I have been up for 3 consecutive nights. We're running low.

Good thing we brought her in. She needed oxygen. We don't have that at home. We also don't have a nebulizer, which I need to get.

As the years go by and we age, it's going to get tougher for us to care for Vera when she falls sick. Maybe one day, we'll have to send her in on Day One.

Hopefully, she gets better with the hospital air and the IV antibiotics.