Sunday, April 25, 2010

Reuben on ventilator

A harrowing night with Reuben. Seemingly fine during the day whilst on O2 and breathing medications but by nightfall he was in a bad way retracting about an inch. I must have been asleep for a bit because I woke with a cuffuffle and the decision was made with my consent to intubate him, that is a breathing tube down his throat and put on a ventilator and if that failed because the throat had become blocked, the trach would go back in. The throat is actually clear above the vocal chords so the problem is either an infection, or a new obstruction below, the former seeming more likely.
The rollercoaster of heartbreak, silly thoughts like his longed for UCLA graduation this Thursday, birthday party, trip to the UK all planned within the next week having gone to the wind.
I took a picture with my basic phone simply because I thought of the trach going back in and wanted to be able to go back and see his sweet nape of his neck and don't feel like working out how to extract it from the phone.
We have been spared the trach for now and he's doing well on the ventilator at this moment. When he came round from general anaesthesia (the decision had been made to call the throat Dr in and do the procedure in the operating room because of the risk of too many complications and scenarios), he immediately went to pull at the breathing tube down his throat, naturally and I grabbed it with a split second to spare. He's now getting IPV to clear his lungs, though this infection, if that's what the problem is, doesn't have the characteristic unrelenting cough we're accustomed to.
At times like that I feel I'm at the Wailing Wall and so very pitiful, my lowest points and rawest emotions.
Thanks everyone. Must sleep now I've picked up Callum. Another almost sleepless night in hospital.
Reading the cardio report this morning the words typical physiology other than the "stigma of CHARGE" jumped out at me. I'm sure it's medical parlance and I haven't felt that stigma of late, but I guess it is there after all. It used to appear to dictate whether Reuben was deemed suitable for intervention, what was considered moral in terms of intervention.
There are people who find space in their lives to criticize me for taking photographs of every stage of our lives, just as I've done since the day Reu was born, the good and bad, it's been like a best friend always willing to listen, the writing and the camera, and criticizing whether I have any talent in doing so in the first place, but sobeit it. I can't change them. But I choose to often keep this blog as a result.


Justin and Victoria Nelson said...

oh no. i am so sorry to hear this news. i will be keeping reu in my prayers for sure.
catherine, i know what you mean about the charge "stigma." but seriously, forget about them...them being whoever makes you feel anything other than the absolute love, pride, and admiration that you have for your dear, sweet reuben.
and seriously, if there is anyone who feels they can criticize you in how you chronicle this journey, they have NO IDEA what you have gone through and what an inspiration you are to so many others in this journey.
much love and lots of prayers, my friend,

Geraldine said...


You're a shining star as a parent, your love for those boys knows no bounds. I'm so proud of you my sister.

Hang in there, they'll find out what is causing Reuben's difficulties and things will become clearer and better over the next few days.

Our thoughts and prayers are with you all.

All our love Geraldine and Mark x

Lorna said...

Take it from can never have enough photo's ( You know why and my story ) Keep taking those beautiful shots and keep these memories forever! I can imagine how hard it is at this time, keep faith, reuben is stronger that you believe and he's a beautiful wee boy.
Take care of you ALL
Lorna & Katie

Shelly and Luke said...

I'm sorry to read about all you are going through right now. Please know that I'm sending thoughts and prayers your way for a speedy recovery for sweet little Reuben as well as strength and peace for you Catherine. Take care and big hugs...

Shelly & Luke

Mama Kat said...

With everything else you are dealing with, I am so sorry you are having to deal with this too. Today woke up with a cold for 2 kids, so wanted to make sure I was ok before I called to come help in any way.