My poor sweet love. They tried again to extubate him (remove the breathing vent) this morning and we watched as he struggled for breath, his heart rate shot up and his oxygen saturation fell. He was gasping for breath but still the upper airway obstruction, swelling caused by the ventilator tube itself in his throat, was preventing him from getting air. It's an horrific thing to watch and whilst trying other avenues, propping Reuben up, giving him oxygen and respiratory therapy, the Dr made a call that it wasn't going to work and Reuben was sedated, re-intubated and finally left in peace. The steroids are not reducing the swelling and unless something magical happens within the next few days before attempting extubation again, Reuben will need a tracheostomy, a breathing tube in his throat, even though anatomically his trachs are "beautiful". Friday, we're hoping for a slot for a bronchial scan under general anaesthesia.
I wonder how much we all can take. By the afternoon, Reuben's staring up at me, eyes wide, smiling fully if he could, enjoying the leg lifts, seemingly blissfully unaware of what he went through. It's a sad situation when you stop yourself from crying because you know it will neither make you feel better, nor make things better. I'll try not to cry for us again, only for Reuben.
4 comments:
hi, i am mary kathryn and our hearts and minds go to you with a prayer for a speedily recovery. My husband and I pray for Reuben daily and know what it feels like to bounce back and forth from the hospital; hang on to those days he was at home and know that he will soon be back with you guys.
Lucas had a hard time coming of the ventilator initially; it seems to be even more difficult due to the small and floppy airway he has; even after he got off the nasal cannula he was very "positional" and breaths easier with his head tilted. we are holding your hands through this....xxxxmk (mother to Lucas 12 weeks old with Charge)
Oh Catherine - how beautifully you write. Your line "It's a sad situation when you stop yourself from crying because you know it will neither make you feel better, nor make things better." has me completely devastated. I remember all too well these days with Keith. Like a harsh advanced class in Buddhism, the experience systematically ruthlessly stripped away any sense of expectation and forced me to live fully and rejoicefully in the moment - no matter what the moment looked like - if only because it still was a moment. And one's own spirit and heart are extruded beyond any limits imaginable - and one is left vulnerable and frayed beyond human limits. Yet we endure and love and light can cast out any darkness or fear.
Such is the source of my wonderment as I stood with the Gang of Five in the halls of the conference, unwilling to miss a moment with them - becuase each I have a is a miracle which had lost its guarantee along long time ago.
And my vessel for joy carved out by years of sorrow (Kahil Gibran)....
I think of you, Jason and Reuben often and pray for the greatest good in Rueben's care always- please let us know if there is anything we may do for you- with love, yuka
From: Anne
Darling Catherine,
I pray often for you, Jason and Reuben. My thoughts are so often with you and my eyes well up when I read your blog - sometimes it's the frustration and desperation I feel from you that gets to me, but more often it's the incredible love, hope and determination to see Reuben get better that shines through and overwhelmes me. You are truly inspirational. I hope Tuesday's op happens without complications and with every success.
Much love from the 3 of us.
A, J and I
From: Mike & Corrie Young
Yuka,
Having two CHARGErs w/ numerous heart surgeries between the two I have a bit
of experience w/ Congenital Heart Disease. This babies heart doesn't sound
that bad! The only question I would have is how bad is the pulmonary
stenosis? I'm no Cardiologist or CT surgeon but I just wanted to give them
hope that these things are all relatively easily fixed(I know it's open
heart surgery, but it's so much safer than it used to be).
As far as the airway goes, we've also had numerous re-intubations after
failed extubations with both our boys. One thing they tried after Tate's
last heart surgery is a gas called Heliox. It's helium mixed with oxygen. It
really helped Tate out.I just knew he was going to have to be re-intubated
and this pulled him out of it. He was retracting horribly. Also, as far as
extubation goes. We always insisted on being in the room because many times
docs see our guys breath and think it's just awful(and it is) but they don't
know our baseline. We also insist on them keeping them calm(w/ a bit of
sedation) because this helped out tremendously. The whole vicious cycle of
crying, stridoring, gasping is very detrimental to keeping them extubated.
Some docs are hesitant at the idea thinking it will just lead to a
re-intubation but when they're upset and screaming, further causing
irritation, they're going to end up there anyway so why not try? I
absolutely hate extubations, they are so tricky for our guys but hopefully
they'll find something to do the trick.
Best of luck to them, i pray that they can find some hope to hold onto.
Those early PICU days can seem so bleak. But I think many of us who have
gone down the multiple heart surgery combined with tricky/floppy/small
airway road, it CAN be overcome!!!
Corrie
mom to Peyton 10 yrs. CHARGE, Cy 7, Mary Catherine 4 and Tate 11 mos. CHARGE
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