The nurse said that she had never seen a more peaceful passing in her whole career, nor had she ever seen such a beautiful expression left on someone’s face.

Ngaire’s last day here was an eternity in itself. Her exhausted, depleted body had nothing left with which to fight on Thursday afternoon, and she begged to be sedated and intubated, in the hope that when she awoke, she would have new lungs.

The lungs didn’t arrive soon enough as the exhaustion took its toll on Ngaire’s ability to keep going. The oxygen was on maximum as her heart struggled to pump its vital payload around her tiny, depleted body. Doctors had a balancing act to perform: sedation – which lowered her already low blood pressure, adrenaline – to help increase blood pressure to satisfactory levels, and, of course, oxygen.

At 3.00 a.m. on Friday, the doctor informed me that her heart wasn’t able to  do the job; as hard as it was working, her kidneys hadn’t produced anything in nearly twelve hours. He said that even if lungs arrived at that moment, she would be too sick to survive the transplant. Slowly, her other body systems were succumbing to the final throes of the battle that she had fought so bravely and hopefully for so many years. She was now, in effect, on life support.

Then began the process of calling dear friends and family, to tell them that our precious one was slipping away. Some came immediately, others when they could; some travelled many hundreds of kilometres to say their farewells. My dear boys and I sat in the hospital cafe, bewildered that we were losing the one who had had the complete attention of our hearts for so long. We united and went to her room together to tell her that we would stand with each other, would be there and support each other for the rest of our lives – that she would not have to worry, because we would honour her love for each of us in how we lived for each other in the days ahead.

There were many visitors, many tears and much love throughout the course of that day. Whether or not she heard us, we don’t know for sure; we do know that she seemed to grow more peaceful as the time slipped by.

She had told us that if she was on life support and there was no hope, that she wanted to be let go, so that she would not be a burden to those left behind. At this point, after years of hope, all that was keeping her body going were drugs.

Shortly before 11.00 p.m., after the last of us had said our final words and we had committed her into God’s hands, they gradually reduced the adrenaline that was keeping her heart going. Slowly, peacefully, she cast off her mooring line to this planet and slipped gracefully into eternity.

A week later, hundreds gathered to confirm, over and over, what I already knew: that she was totally unique, a woman of priceless quality, utmost integrity and overpowering honesty. Thousands of messages from around the world echoed the impact that she had had on so many lives.

Ngaire Susan, the richness of your short life is beyond compare as, no doubt, is the honour that you have received on your arrival:

“Well done good and faithful servant. Well done honest, loyal and compassionate friend; well done sacrificial, loving and thoughtful mother; well done beautiful, bubbly, warm-hearted soul-mate; well done Queen of my Heart. Well done.”

I will post the story later, but here is a poem that I wrote five days ago. She was the greatest treasure….

Bruises

Beside her bed, I hold her hand,

See her arm in purple shades like

Menacing clouds, that she –

The artist – would likely

Call Payne’s Grey;

Her other arm in venal relief

Equally shaded, like an ironic gauntlet

For the life-enhancing nutrients

On their journey from bag to body.

When we were young

We never bruised – our perfect

Bodies, mistreated by youth,

Resilient and impervious.

Now we have seen and walked

The years which teach and,

Though hesitant to call them friends,

Have learnt through wound and bruise,

A way of love and care

That is slower, deeper

Than those young hearts dreamt.

We did dream

Of growing old together,

Of walks and conversations

And grandchildren; of miracles,

Transformations and freedom,

Never thinking of the depth

That the bruises would plumb in us –

Never conceiving that the path of love

Is hard won, that the wounds shared

Would be anchor points of joy

As our hearts strengthened

And deepened.

The eyes that once held wonder

And promises unknown, now

Are known wells of grace from which

I draw daily my familiar unspoken

Blessing, with always the richness

Of something far deeper.

Beside her bed, I hold her hand

And caress the bruises that

I wish I could share.

I’m sitting in the San Cafe with Remy and Ed; Jordy is on his way. After a beautiful start to yesterday, with Ngaire out of bed and starting to eat solids again, today has taken a horrible turn. Since this morning her oxygen levels didn’t get above 80%. Normally, this could be weathered with rest and proper breathing technique – but not today.
The doctor did some tests and discovered a pneumothorax – one of the tiny pockets in her left lung had burst, leaking air into the pleura (the sac surrounding the lungs). This meant that a portion of her left lung wasn’t working properly.
After a procedure to release the air, it was thought that her levels would improve. Sadly, after two hours, they hadn’t, and Ngaire was fighting for every breath. In the end, through sheer exhaustion and with her oxygen still in the mid-70’s, Ngaire begged to be intubated. She was distressed and spent.
She jotted a couple of shaky notes to those of us closest, then the team moved in.
In Ngaire’s situation, intubation is basically life-support. Once on, they can’t take take her off until transplant. She is also heavily sedated – unconscious – and may or may not hear us.
After the procedure, the doctor informed me that it was an extremely difficult process and she wasn’t happy with the balance of oxygenation, blood pressure and sedation. She said that if she could keep Ngaire alive through the night, she would be overjoyed.
So we sit in this cafe, contemplating this door to the Twilight Zone. We have all had tears, but we all cling to the hope that still resides in that precious girl. Please join with us.

Another brief one: Ngaire has had three good nights in a row and is more used to the uncomfortable BiPAP mask, being able to sleep well with it.
It seems that the drugs that she has been on for the pulmonary hypertension may finally be beginning to work. Her breathing has become easier on the BIPAP and she requires far less oxygen in the mix to maintain good levels in her blood. She will have another echocardiogram soon to verify that the drugs are working.
This period now is about positioning. We are getting good nutrients into her body; now her heart needs to rest in trust for the days ahead. It seems increasingly unlikely that she will be home before transplant, so peace and rest of spirit are what she needs. Oh….and some new lungs.

Just a brief update this time:

Ngaire has been in ICU for two days.
Because she was unable to maintain adequate oxygen saturation – even on the maximum level available – they have put her on the BIPAP machine (Bi-level Positive Air Pressure). This forces oxygen into the lungs and holds them open, so that they can absorb more. It is a marvelous invention , though very uncomfortable as it needs to seal around the nose and mouth. The mask Ngaire is wearing as I write is not all that different to a deep-sea diver’s mask, sealing entirely around the perimeter of her face.
On this machine, she is able to maintain oxygen saturation of 90% +. Along with this, her heart rate has reduced considerably to around 100. After the oxygen deprivation incident of the other night, her heart rate was over 140 for a full day.
At this stage, she is holding her own, and we are hoping that this will allow time for the hypertension meds to kick in, thereby helping her breathing even more; all of this with a view to keeping her as fit as possible to receive her donor lungs.
We understand that she is a priority case and that the search is now Australia-wide.
Please pray that a match can be found soon. This situation, while positive, cannot last indefinitely. Thank you.

Not many of us can really imagine what losing the ability to breathe would be like. We know what it’s like to be caught underwater, desperate for air, or to have exerted ourselves to the point where we have to gasp to fill our lungs; but always we end with the ability to draw deeply and be satisfied. It is the middle of the night – as good a time to write as any. I am watching Ngaire’s heart-rate and oxygen saturation monitors at Sydney Adventist Hospital at 3.06 a.m.. It has taken an hour to get her saturation up from 69 to 83 – an acceptable level according to her specialist.
At least she has been sleeping for most of it. The last eight days in here, have been a roller coaster: one night in emergency followed by two nights in ICU to stabilize her, then up to the ward. At no time has she been able to leave her bed.
The drugs that she has been given for pulmonary hypertension will apparently take 7-10 days to start working. Until then it is a balancing act of oxygen and effort; the effort in eating, moving in bed, coughing, all take their toll.
Last Friday night, Ngaire didn’t sleep at all and, come Saturday morning, she was in a pit of exhaustion. Just maintaining levels in the lows 80’s was virtually impossible; she couldn’t move, speak or even open her eyes. She had a cough that defied description with a wheeze that sounded like a discordant string section tuning.
I thought that I was losing her. I talked to doctors, but wheels seemed to move slowly. It was mid-afternoon before the diagnosis that the fluids they had been giving her to keep her hydrated were filling her lungs. All fluids were stopped and a diuretic injection administered. Within a couple of hours she had passed copious amounts and was miraculously alive again.
A nebuliser has been part of her treatment, to counteract the drying effect of breathing through a face mask and to keep her mucous membranes moist. On Monday night, I didn’t notice as the nurse swapped the oxygen mask for the nebuliser, that there was only air, not oxygen flowing through it. Only after a couple of minutes, as Ngaire took on the pallor and strange vacancy of one whose oxygen levels were plummeting, that I yelled at the nurse asking if there was oxygen coming through the nebuliser. She suddenly realised what was happening, reattached the oxygen, and hit the alarm, but not before my precious one began to shake into unconsciousness with oxygen saturation of just 40%. It is an image that I will never get out of my head.
Within moments, the room was full of people – 8 at least – all focussed on Ngaire and her desperate condition.
Slowly she came back, and I don’t think I have ever been more grateful for anything.
This waiting game is brutal but each day we are a little bit closer to the finish line. Weeks like this, however, remind us that there is the not insignificant issue of time, looking to run us down before we get there. We are praying that God will be the lollipop man at the crossing, so that Ngaire can reach safety in time.

The Book of Psalms is full of poems of those who cried out about the struggles, injustices and pain that they endured. Some were “full of faith”, others full of unanswered questions. I am encouraged that God has, in the Bible, the stories and thought streams of those who doubted. Whether we believe in God or not, are angry or frustrated with him, destitute, faithless or despairing – he is no less a loving God, whatever that may look like from the perspective of us who dwell in the temporal lands. This I know: he is the great affirmer of life and we put our trust in him.

As an addendum, Ngaire has been moved back to ICU today, where she will receive more intense oxygen therapy.