Waiting for a transplant 3 – the roller coaster

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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.

23 thoughts on “Waiting for a transplant 3 – the roller coaster”

  1. Our thoughts and prayers with you both daily. I can’t imagine what each of you is going through. You and Ngaire are ‘beacons on a hill’ and an inspiration to many. God bless Matt.

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  2. Such a heart rending journey. Thanks for sharing it with us in this way Matt, I hope it helps you and beautiful Nga to know that even from here I’m praying for peace, and expedient answers, and comfort.

    When we chronicled our mother’s hospital journey it was on paper, with cards letters, photos, in a pre digital time and manner; and this blog is a lot easier to share, but I can’t recommend it highly enough. Our big diary is wonderful to look back on, simply to see how far she’s come. I trust this will be the same.

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  5. I’m so sorry to hear of this very difficult time for you all. What a dreadful episode you had with the air and no oxygen situation. Thank goodness you were there to cry out on her behalf for help. We continue to pray daily for a miracle for Ngaire and that God will sustain you each and every day of this journey xx

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  6. Dear Matt….I write with tears running down my face at the terrible ordeal you have both been facing. Thanks for sharing so openly and honestly! We can’t possibly imagine what you are facing day in & day out. Yet I know God’s promises are true and that He is with you both in this! I guess very few words really help at this time! Be assured Lionel and I are praying for all of you!! Our love Chris and Lionel xx

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  7. Thank you Matt, for opening your heart to us to write words which must be painful.
    We continue to pray for Ngaire, you & the boys.
    Thank God you were there with Ngaire as these crises happened.
    We love you both & you are in our hearts & prayers.
    Much love xx Lenette & Steve

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  8. I’m reading this from Kenya and praying for God’s strength for you all. Thank you for sharing with such honesty about this.

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  9. Matt, thanks for your words, I had no idea how bad the situation had been; your courageous is incredible; praying for you both to have a peaceful, restful night x

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