Friday, August 1, 2008

Urology surgery success

We arrive at 11am and exactly 12hrs later, are finally admitted to surgery. It's a gruelling day for all of us, confined to a room with rock hard chairs and signs clearly stating ''No food or drink''. Perhaps that is in sympathy for Reuben who does a mammoth 30hrs without food and much of the first 12hrs without liquid. It becomes quite inhumane and yet Reuben is the essence of patience, signing More More More everytime Jason holds him upside down by his ankles, signing More often before Jason has laid him down to catch his breath in between. After 7 of the 12 hrs we were moved to the Surgical Preparation area, a ruse that we were about to go in and yet at least there is something resembling a comfy seat there.

The wait is broken by home nurse Kristina and mum Margaret paying a visit 90mins across town with gifts which reawaken Reuben and distract us all before he's taken to surgery. Their ginger cookies are called upon in the middle of the night as morning sickness kicks in. So very kind.

At 11pm, having admitted emergency cases before us and overrun on others, Reuben is wheeled away to surgery. We have to thank Dr De F and his anaesthesiologist Dr N for mustering the energy to continue with the case. We study their faces for signs of over fatigue but are given plenty of reassurances and apologies.

They find the lads, hiding way up at the top of the canals where noone could have found them and it takes three sets of keys to access the canals and locate them. The truant rascals.

Needless to say, ENT has long gone home and we'll have to address those issues under anaesthesia another day. (Later, ENT are at least able to confirm both ear tubes are in place).

What then ensues is a very tough night. Every other patient had been sent home or to the wards, so we have the whole recovery to ourselves and one nurse on a 24hr shift with perhaps as much residual energy as us, to help. Reuben struggles and cries in a way he never does. I look up at one point from a wink's sleep to find he's kicked off his covers and is trying to crawl. Distraught with tiredness we forget to ask for the nebuliser or cool mist humidifier but then isn't part of the process of being in hospital, that you can rely on the professionals to take over for a bit? The whole thing is a disorganised shambles. Reuben's breathing is raspy and whistles through his trach. The air is thick with the scent of morphine and fentnyl which brings me right back to the PICU last year. I think with irony how entwined, how inextricably linked with memories, is a sense of smell.

He's home now with his 3 new scars in a row under dressings on his battleground of scars and doing remarkably well. I hope the next 2 laparascopic surgeries to continue the location and descension will be a little more forthcoming in the day though.


Kristi said...

Glad you are home and glad Reuben is doing well. So sorry that his night (and your night) was rough... I can't believe they did the surgery that late and I can't even imagine how tired you guys must have been. But, at least it's over and to quote you (which really made me chuckle just now as I read) I am glad the "rascals" were eventually located :-). That whole area of this CHARGE journey is, of course, foreign to me!
I miss you... it's been so long since we last chatted. I think of all of you so often and am truly in awe of the latest developments with "Remarkable Reuben" (as I have now begun to refer to him!). He is amazing and your love and hard work with him is so evident.
Thrilled to read that Reuben's new nurse is working out so well. I must tell you - - I completely welled up with tears when I read her post from last Friday following Reuben's first crawl (AMAZING, by the way! And, his communication skills BLOW my mind). What a gem you have found in Kristina.
Finally... (perhaps this should have been an email... it's so long!) can you please email or text me your new address... we have something for Remarkable Reuben! :-)
Love to you all (including Buttercup!)

ellen charge said...

wow i knew thered b an update at least they took you in and didnt make u wait till the next day or week or whenever maybe the ent stuff could b doen in the next stage of the surgery and any other sutff that needs to b done its allways good to coordinate stuff wat an amazing nurse you all have such a great thing love u all and keep strong xxx

Victoria Nelson said...

so good to hear that Reu is doing well. what a great home nurse you have to come visit while in the hospital. You are so loved, Reu. We are so proud of you! love, justin, victoria, and moriah

MK said...

wow, I am surprised they had that many emergency surgeries to do that pushed you guys so late into the night; crazy... .. glad you all are home now though. for us the surgeries only seem harder as the boys get older. Lucas is always raspy in recover as well, don't know if having the trach is different for surg. but they intubate Lucas every time, which is another worry for us. Glad they found the boys, hopefully they'll stay put till next time; also am surprised they that are having to do it in three separate procedures. Anyway hope you all catch up on some needed rest and have a good weekend!!

Lori Pullen said...

I'm sorry to hear you and Reuben had such a rough go of it. 12 hours just waiting to get to surgery. WOW!! I hope all is well now that he is home and the next surgeries will go a lot more smoothly than these have gone. Give little Reu and little Buttercup a kiss from Auntie Lori.
Love to you all,
Auntie Lori