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.