Friday, October 9, 2009


The only barrier to Reuben having his trach out - tonsils!

Photo after photo of Reuben's throat was shown to me after being taken into one of the ominous consultation rooms with Dr K, previously the bearer of only bad news to us (including the omnipresent "it won't necessarily be forever" diagnosis which accompanies the trach and said as if it is of some comfort), of a beautiful trachea, a beautiful set of vocal chords, a beautiful larynx and the only photo he didn't duly mark with a tick, was that of the tonsils. Gone the upper airway obstruction, gone the gramulomas on his vocal chords, gone the laryngeal malatia.

The tonsils would need to come out, but here's the rub, Medical insurance and thus likely CCS won't pay for a tonsillectomy and despite face to face petitions in the last 12 years, Dr K's had no success in influencing them. How ridiculous when decannulation (the process of removing the trach) will remove several thousand dollars of monthly committed funds on trach supplies alone, let alone nursing, the expense of recurrent tracheal and pharyngeal infections as a result of the trach. But, we'll find a way round this. We just will. I know too from a little reading that a tonsillectomy shouldn't be taken lightly, and that the tonsils are connected with the immune system, but we have to weigh up the benefits.

This is much hoped for news and explains why I was able to cap Reuben for moments with my finger during the day, but that he wouldn't tolerate being capped at night due to his tonsils. The process of decannulation would be the tonsillectomy, followed 2 months later by a sleep study where Reuben's trach would be capped and the observers would look for instances of desaturation. If successful, the trach could be removed. This is beyond music to my ears! You most honestly do get used to the trach, often finding it therapeutic cleaning every last bit of secretion from his trach during suctioning, never going anywhere without his suction machine and the accompanying paraphanalia, and yet, trachless, breathing normally through his nose and mouth, opens up a whole new world for Reuben regarding swallowing, schooling, freedom and safety.

His 3rd and final urology surgery went well too, the 2nd testicle having been brought down, and leaves him with 3 little car bandaids covering the incisions in his belly button and on either side and then stitches over his testes which can only be wincingly painful for him.

As he was being wheeled away at 8am, he was laughing away at the bevy of nurses and Drs wheeling his gurney into the operating room, each wearing blue net hats and they were laughing along with him, remarking on his wild curls and angelic face. He was trying to stand up on the gurney and for this reason, elective surgeries are so hard, knowing how different the returning Reuben would be. Everything currently comes in pairs with Reuben "It's the same", he would sign at everything he'd see in pairs, 2 lights on in the car this morning, 2 nurses with matching hats, 2 butterflies on the mural leading into the OR. For Reuben, the sign is like an "I love you" except without the index finger and the pinkie and thumb rock back and forth between the objects of sameness, connecting them.

Reuben, as with life, weathered the storm tremendously well, but was visibly in pain at times when his tylenol with codeine was due. He'd been given a spinal block for general anaesthesia and that inevitably leads to a dry mouth, itchy skin and puffiness.

My only tears yesterday came in post operative recovery, listening to 2 toddlers on either side of Reuben screaming for several hours for attention, not from pain. Hard of hearing or not, Reuben clearly heard these voices, as the nurse said, one of our nurses from the PICU days, the child on the right would clearly not have any problems with pneumonia. It became so bad, cutting right through us, that I had to say something to the nurse and, with one child having been discharged, the 2nd was moved to a solitary room, whereupon the 4hr crying session abruptly stopped. Our home nursie Jenn spent 7hrs with me, arriving soon after recovery and staying long into the evening and that was after her night shift at home with Reuben. I leave at 7pm and Reuben spends the night in a bright room with views over the Hollywood Hills, the Hollywood sign and the Griffith Observatory.

I picked up Callum whom I could hear crying as I walked up Jennifer's pathway, drove home and we both fell straight to sleep, dreaming of one day vacations in the sand and sea.

The screen shot Kristi took when she posted to the blog. The word verification is always a made up word to prevent spammers. So pay special attention to the verifying word, trach. "the hairs on the back of my neck stood straight up and I've been holding my breath waiting to hear news of Reu's L&B since then! I considered it a very hopeful sign! :-)" - Kristi

And this morning I read that Candi's Luke has just had his tonsils out today for the same reason...

Update: A couple of quick, easy calls to CCS and his surgery is approved. Never listen to never, 12 years of experience or not! 


Anonymous said...

We are so elated for you! Yay Reu!!!!!!!!!!!!!!!!!!!
The Segils

Sara, Julianne & Rachel said...

Such wonderful news. I really hope those pesky tonsils can be got rid of. xxxxx

Anonymous said...

I'm so happy for Reu ... that is GREAT NEWS!!!! My boys both had their tonsils out at 3 1/2 ... the recovery wasn't too bad. But I think removing the tonsils is the right thing to do for him as well. I read all about the cons/pros of it. You have to do what is right for your child. I wish you luck and hope the insurance co. reconsiders to pay for it ... if not you'll figure it out I'm sure. Love, Tracy K.

mog-aj said...

there is nothing so amazing and scary as the sleep study and eventual deccanulation :-)! Keeping it all crossed that you keep on this path. A safe way we found for capping was to cover a swedish nose wth tape and put it on, when they can't tolerate it it just blasts off!

mog-aj said...

Fantabulous news on the approval. Sx

The Claytons said...

Such great news!!

The Clayton Family

Candi said...

I am crying happy tears right now!!! I am beyond excited for you guys - such wonderful, wonderful news!!! Give Reuben a great big hug and kiss from Luke and I. When can they schedule the surgery? Are you going to cap between the tonsillectomy and the sleep study?

Luke is doing well - pretty much back to his normal happy self today - and already tolerating his PMV again. He is supposed to have a capped sleep study in a month and then we will go from there. I will let you know how it goes.

Kristi said...

Yay! I knew you'd get an approval from CCS! :-)
So happy for you!

Will Reu have a sleep study and a new swallow study following the tonsilectomy (prior to decannulation?)?

Do you have a timeline?

So glad that he's home and that all these great things are happening!

Geraldine said...

Finally, a light at the end of the tunnel... what uplifting and hopeful news! Here's to getting those tonsils out.
Lots of love

hannah m said...

I've been thinking of you guys so very much...and am so happy to finally sit in the quiet and read about the rousing success of Reuben's procedures. So, so happy! With much love, H+V+v