Monday, November 25, 2013

Not been a great month

Hmmm, so Sam has had back-to-back urinary tract infections since he's had his refashioned bladder surgery. It's really disappointing for all - especially Sam, as he has to cope with the pain and discomfort and extra antibiotics on board.  We had all hoped this change in his drainage would mean he has less utis, but sadly it's the opposite.  It's now looking likely that oral antibiotics aren't enough to keep the bugs at bay, so the team are mulling over how best to treat them, with input from Infectious Disease and the surgical team.  This meeting is to take place on Dec 2, the same day as he has renal ultrasounds and a surgical review.  This multi-team meeting is too far away for Sam, so we are awaiting input on whether we have to have daily trips in to hospital for a few hours each day to have I.V. infusions.  This clearly would be preferable than a full-on admission, where he is open to hospital germs if just hanging about passing time til the next infusion.

Last week we visited Starship twice - one day for gastro clinic and one day for surgical review.  We chatted through the possibility of joining his bowel back together, getting rid of his ilieostomy and seeing how he copes with pooping via the normal route.  This was just a discussion with more details and input needed from surgical.  The previous week we had an immunology clinic, which re tested him for various allergies.  The good news is that it shows he is now no longer allergic to soy, so with this new info, we are now tempting him to eat by playing with soy yoghurt and ice cream - rather expensive 'play toys', at $2 for a teeny tiny pot, but hey, if it can open him up to tastes and eating it will be worth it.

So a bit of a tired, 'bah humbug' blog today - with uti's Sam wakes a lot more with vomitting, so we're all a bit weary - to the outsider they would think Sam was just being naughty - we know that he always screams/hits/gets naughtier as he copes with the pain.... so if you see a handsome, smiling but slightly naughty boy, it could just be Sam.  It is a challenge allowing him space to cope with what he has to, and guiding and training him up in what is appropriate.  We are learning (& failing plenty) on giving him coping strategies that isn't just medicine!


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