Friday, January 30, 2009


How strong you must be when your heart is breaking, smiling sweetly yet holding back the tears.

We leave for Children's at 5am. Reuben sits up on the stretcher and the Dr with the joyfully patterned headscarf holds his hand and he succumbs so easily, his heart open and full of trust.

He gives a little glance back to Mama, Daddy and baby, as the stretcher is wheeled under the vibrant halogen panels and it is all a game as if he's back at the playground of yesterday, so happily enjoying himself and walking his longest walk yet, all the way back to the car whilst holding my firm hand.

In recovery, morphine seems a long time coming. His body, a spangled mess of tubes and wires. He looks at Callum and signs All done. We make the decision to put him on oxygen as he was struggling against the pain. And yet as he is wheeled into the elevator on our way up to the floor, he signs Apple to me, the opening word of the Alphabet Song. He always wants to please me.

The anaesthesiologist asks in his debrief if Reuben is always so placid.

Reuben is restless; its hard to determine if he's asleep or awake, drifting as he is. Its hard for him to determine the source of his pain; on his foot there's the IV line delivering morphine, his scrotum has a ghastly open wound without gauze and behind it the newly brought down first testicle, left bruised and battered from its journey, his belly button has an incision and is flanked by 2 other incisions behind bandaids decorated with trucks, the scars are re-opened from his first urology surgery and are used again to access and then clamp the blood supply to the 2nd teste, thereby forcing it to descend as it seeks a blood supply further down; his trach is oozing blood which keeps clotting and causing mucus plugs, where the ENT surgeon cut away a sizeable substomal fibroma which was obscuring his airway by 90% and thus making any vocalisation with the speaking valve impossible; his right ear is causing him pain where the surgeon has removed an ear tube on which lay granulation tissue, inflammation caused by the ear tube required to drain fluid from his ear. His body is a freshly laid battleground. Can you imagine the culmulative pain? It's impossible.

There was noted some minimal movement of the vocal chords, no paralysis and perhaps without the effects of anaesthesia and now with the removal of such an obstruction, he can, with time, learn to vocalise. Kristi reminds me of "yet''. He cannot vocalise, yet.

After 15 months, there is little improvement in the laryngeal malatia and upper airway obstruction that first necessitated the trach. That's disappointing.

Dr Charlie Golden his paediatrician visits him, as does day nurse Kristina and mother Margaret, and night nurse Jenn. I hear our faithful Charlie saying how he loves our boy to a fellow Dr. We are so very touched.

During the first bloody plug, Jason and I rush into action to clear it; the second, Kristina and I and during this, Reuben is looking ashen and his saturation falls to a terrifying 30% although the Dr tries, unsuccessfully, to convince us the waveforms aren't correct and he's ok. He is not ok. We know on the hospital floor, the ward, you do so much of the nursing yourself and the nurses work to your plan during such episodes, assisting you. You are then the expert in that field. The desats are brought on by his pain, his holding his breath throughout such episodes.

Our little boy willingly wheeled away from us. I am in tears by his bedside all night helping him through his pain and delirium whilst Jason and Callum have returned home for some much needed rest. I am grateful to Callum, can you hear me love, for being so well behaved all day as if you knew.

This never gets any easier. And he has many surgeries still ahead.

What trust as his gorgeous eyes so red and full of pain, even if for a better future for him, stare at me so long and hard, him holding my hair for comfort hour after hour and those loving eyes I feel he feels I have forsaken.


Heidi @ GGIP said...

So sorry to hear about the pain. I hope you have a good pain management plan to go home with.

Kristi said...

So glad you are home... and hoping beyond hope that the fact they let Reuben go home means that his pain is now well managed.
I am so saddened to know what a rough day and night he had... and what a rough day and night you must have had as his mum and dad. I hope being home makes him happy and more comfortable.
With love,

hannah m said...

Oh, dearheart Reu! Hoping you're feeling better in the comfort of home with mom, dad and Callum.

Catherine - my heart goes out to you hearing of a traumatic hospital stay - I empathize completely, friend.

Continued prayers!

Candi said...

I am glad you are home now and that they finally got the surgeries done. Luke's second orchiopexy was definitely worse than the first, but he also got his g-tube at the same time. He goes in for an ENT surgery on the 12th, then his third (and last) orchiopexy on the 26th. What did they find in the bronchoscopy? Good news, I hope! We will be thinking about you guys and hoping for a quick recovery for Reuben!

Sara said...

Poor little Reu and poor you. I love the fact he was signing though.
Lots of gentle hugs to him.
Steve sympathises on the scrotum front - he had to have surgery as part of our first doomed ICSI attempt.
Much love

hannah m said...

Sending you all hugs.

Justin and Victoria Nelson said...

my dearest catherine,
so, so sorry to hear about this. you all are very much on our hearts. we love you guys and are saying continued prayers for comfort for our sweet Reu, and for strength for his amazing parents.
love always,
justin and victoria

amy and mighty max said...

oh my friend, my thoughts are with you and your sweet family.

ypersico said...

what a hero Reuben is <3 and you, Jason and Callum too <3 <3 Keith had all his pain in the unit - before nine weeks of age - before differentiated experience. All procedures after had pain easily dissuaded by dilligent tylenol. He had his orchiopexy at age 10 - which he managed on his own with great gusto - as is his habit. All medical suffering since has been fully his own. Yet I remeber feeling quite the betrayer as the medical model physical therapy literally tortured him amidst loud claps and ill placed cheering - it must have been confusing for his forming pyche and understanding of how the world works. That I did not know to intervene for him at the risk of good progress is one of my few and deep regrets. Much love to you and the family. We hold you in our thought and heart always- ~y

Eva Nichole said...

My thoughts and prayers are with Reuben, I am so sorry he was in so much pain. I hope as time goes on he is back to his old self.
Crystal and Eva

Henwhisperer said...

I have just fallen in to your blog and have spent some time reading it. My dear, you are a saint and I pray that the Lord blesses you more than he already has. Really, God bless you and your precious son. I have lifted you and your family up to the Lord. He must have special plans for your boy.