Update: The infection is pseudomonas, although not pneumonia in his lungs, but growing in his ET (endotrachial) tube, the same pseudomonas which lead to his admission on 12 July and spiralled into intubation, throat surgery, heart cathetarisation, lung collapse, heart attack, failed extubations, bypass heart surgery, throat surgery #2, failed extubations, planned trach... pseudomonas. Groundhog Day?
So, the trachial tube which gives him a passage to breath caused damage to his trachea which has lead to a trachial infection and the need for a trach. One thing's for sure, that's far too many trach words for my liking!
The surgery may not be this Thursday for 2 reasons: he'll be an add on not scheduled and I'm not sure I want to go down that path of taking him off his feeds given that, as Erica pointed out, he's been off his feeds for a total of 240hrs, 10 days. Also, given the infection's in exactly the spot where they'll be operating, it may not be such a good idea to operate until he's clear of this bout although Reuben will continue to be colonised by pseudomonas even with the antibiotics.
I stood in the cafeteria line (the canteen queue) and found myself looking straight across at Dr Cambridge, the ENT Dr who was due to perform the surgery today. She looked aghast and sincerely disappointed for us. Anaesthesia were all ready to go, albeit that the OR was packed with cases. Handing her employee account card over to the cashier she said "I'll get her lunch. She's having a bad day".
13 comments:
Oh my goodness, Catherine... I am SO sorry. Just as you get geared up for the next step, a delay. How frustrating and what a test of patience for you and Jason. Thursday, now...
"It is what it is," right?
I know you're not overly fond of the expression and that you've learned to use it quite a lot lately. Apparently Reuben has his own timeline. I hope all the excitement yesterday didn't wear him out. :-(
Thinking of you always.
With love,
Kristi
Rrrrr. It's always such a let-down when procedures don't go as planned (Evan's cleft palate repair was rescheduled so many times...so frustrating). It's better for Reuben to be in the best of health for this--hopefully that will be soon.
Hugs,
Sarah, Jeremy, and Evan
Catherine and Jason, so sorry thta you got yourselvesmentally ready for this and then have to wait. Also sorry the poor Reuster has a fever, I hope he is recovered from that asap and it can go ahead on Thursday.
S, S and A x
Holding you in love beneath the chaotic current - oxo,y
big hugs
i am thinking im gonna fix that last post abit coz i coppied it form cris and evas blog and well wa all her writing and didnt relise ill make it bit better LOL hugs check tomorrow
ooooooooooohhhhhhhhhhhhhhhhh i love ur dr how wonderful ay read my blog iposted bout u
Another delay, how frustrating it must be, building yourselves up for the op each time. However, as Skeybunny said, it is best that he is in the best health for the procedure.
Love as always
Erica
I am so sorry about the postponed surgery. I hope he is better soon so this can be all done and over with. Its also so wonderful you have wonderful staff around you all helping.
My thoughts and prayers are with you all,
Crystal and Eva
Reuben is such a beautiful bright-eyed baby. I am so sorry that he has a fever and his procedure had to be rescheduled.
What a caring doctor he has. I learned to appreciate CA doctors when my daughter lived in Newport Beach for eight years.
Sending prayers and love to you from Charleston, WV.
From Maggie:
Hi Catherine,
Just wanted to drop you a line to say that we're always thinking of you, Reuben and Jason, especially now as things seem to be going from enormous challenge to enormous challenge for you - and to have a delay in surgery again (and one that you've been worried about from the start) must be so hard for you. I really hope he makes a swift recovery from his fever and is back on track for surgery on thurs. And hopefully from that surgery, you can start to think about getting your precious little boy home again.
I read your blog site pretty much daily and think the three of you are just the strongest and most amazing people - you really are. And the staff there sound fantastic and supportive, not to mention the other families you've met you have been through and are going through similar experiences. I've learnt such a great deal from you over the last few months, about so many things - love, friendship, motherhood, family - things I guess that sometimes get forgotten in the daily hussle and bussle of things.
I'll be thinking of you all on thursday and hope all goes smoothly for little Reuben.
All my love, maggie x
From mum and dad
Hi Catherine and Jason, Our thoughts and prayers are with you three at thistime as Reuben begins what we trust will be the last milestone on hisincredible journey. Our Love always mum & dad xxx
From Sara Whiley:
Hi hun,
As ever I've been folowing your blog avidly. The video brought tears to my eyes - he's such a gorgeous boy.
I hope the trachy op goes well on Monday - I believe you will be able to take him home soon?
Lots of Love
Sara xx
http://www.babysites.com/sites/whileytwins/
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