1. A good looking esophagus and trachea. No problems here.
2. Inflammation in the throat caused by intubation and potentially, reflux.
3. Damaged larynx. Granulomas on the vocal chords, significant swelling of the vocal folds all caused by the ET (ventilator) tube.
ENT procedure: Co2 lasering of granulomas from one vocal chord, not wanting to risk removing the granulomas from both sides of the vocal chords, I believe, to reduce the risk of scar tissue closing the airway completely. So I'm not sure if the other granuloma will just go away or will need to be lasered later (must google).
Reuben is on steroids again to reduce the swelling. The plan is to try extubation in 5-7 days.
Wasn't this good news? although I didn't allow myself to smile throughout. ENT then flipped over the photos and began to write 2 numbers on the back. It dawned on me that these were the contact details for arranging to watch the tracheostomy video. We're still in trach talk if extubation fails.
When the ENT surgeon returned to pick up another patient for a trach (and tried to locate the mum who's sadly never around and leaves me wanting to pick up that baby myself and take him home to love), I clarified "Does Reuben have laryngeal malatia?". He replied that he hadn't seen laryngeal malatia so I guess I'm still wondering if that's conclusive.
Reuben is ferile this morning so we're hoping it's just a temporary thing from the surgery and his temperature will come down.
I've got to admit, having got my head around the gtube and fondoplication, the anatomy of the heart (VSD, PS, CoA, ASD) and ear (cochlea, auditory nerves), the throat itself is a whole other crash course to take. As the advice has been here, just take each day at a time. I'm just hoping the days til Wednesday will fly.
4 comments:
I guess another example of taking each day at a time and seeing how he is next week, when an extubation will be attempted again. Good news that if he does need a Trach, that he won't need the ventilator.
Amazing photos!
With love
"Are we there yet?" - nothing makes a trip seem longer to me than a small child passenger asking this question in the car. Conditions previously unnoteworthy become points of awareness. It was the same for us when Keith had inconclusive medical news. We did everything we could to hold on and stay in the moment and experience Keith in the moment together - and not in some idea of a hoped of or dreaded of future- and other people would ask "are you there yet?" Sometimes medical people would tell us "we're not there yet", or if we seemed too content "you know, we aren't there yet". After seventeen years of tube feeding, one of Keith's uncles still asks "does he eat yet?", and is always sad when the answer he understands is "no".
I have found part of holding on to the essence of light and love is not to look to until when. The answer is always now. And time become a continuing series of "nows". And "when" becomes irrelevant because while living in the "nows" an entirely new sense of wholeness emerges - one connected vibrantly to the capacity of the moment and not some expectation or abstract. The reference is always interior and within.
I imagine for you a never ending series of "nows" full of love and joy and deep connection and fullness. I aslo imagine for you some blissfully restorative sleep and some hearty laughter. oxo,y
just thinking of you daily and pray so many mighty and moveable things for you. that when this is nearing the end meaning your now journey that you know in your heart and find it is NOT your destination but simply a detour to finding life and embracing you and reubens amazing gifts in a whole new light. that confusion be far from your eyes that grace pours over you again and again like sweet wine, turning over a new leaf,you CATHERINE have such strength and i am amazed by your perserverance. I would love to one day meet you and full on give you hugs and understanding! We are with you till the end....
you rite beautifuly just like our sev loveu hepas
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