Monday, January 30, 2017

It's been a while!

Hello again!  'Pinch and a punch for the first of the month' is nearly upon us again.... and tomorrow is Day 1 of school for Sam.  He will be heading in to his year 3 class, with Ange (his fabulous Learning Assistant/carer) with him.  Sam went to bed concerned over which playground he would have access to, but I hope my assurances that he would be told would all be very clear in the morning.

Sam has had a busy summer, with mostly good health. This summer has been very different for him, as this is the first year without an exposed Central Line - his new Portacath is embedded under the skin, so this means he has been able to be in water!  Sadly the NZ summer has been rather lack lustre, with it only really arriving in the last 5 days, but he has been able to get out in the water and grow a little in confidence.

Sadly the last 10 days Sam has had another UTI (Urinary Tract Infection) that has meant antibiotics 4 times per day/6 hourly.  The bacteria that grew from his urine was a totally new one for him and so odd that the lab requested I send in another sample in case it was contaminated.  On Friday morning we popped into hospital and dropped in a sample, which sadly confirmed that he truly is growing this new organism.  Unlike all the other myriad of UTI's he has had, this one left him in a lot of pain (waking every hour and begging for me to give him a saline bladder wash out), BUT his urine stayed clear.  Usually the first sign of a UTI is the urine turns milky and thickens.  So this was a weird scenario all around.

I start the year again so grateful for medical care 'second to none'.  Yesterday (Sunday afternoon of a public holiday weekend), Sams Paediatrician phones me to sort out a change in antibiotics and to check in on Sam..... so so grateful!  Sam is currently clinically pretty well, so we are hoping the next 2 week course of antibiotics will clear it and all will be fabulous. This week Sam also has an outpatients clinic on Thursday afternoon (he will miss a couple of hours of school).  I will also do a class chat with his classmates, which is thankfully accompanied by Sams play puppet, Sammy James Jnr, to help educate all and sundry in an age appropriate way.  I think I also have a middle school staff meeting to attend to help the staff have an awareness too.

Sam has been much more vocal about his medical stuff over the past 4 weeks. He has been telling me he hates being 'special' and 'I wish I didn't have tubes anymore'.  This is all very normal behaviour, but I would appreciate prayers for wisdom as I help him through what is his reality.  I would honestly switch places in a heartbeat if I could, although I really dont know how I would cope with all he has to.

I will endeavour to update the blog more regularly.  I leave you with photos of Sam and his adventures over the holidays:  At Mt Maunganui (I enjoyed the view and the water, Sam enjoyed his cars!);  Sam on holiday with his Dad enjoying the water and camping;  His very cool new bed at his Dads place; Sam having his first sleepover with his cousin Xavier and hotpools with Candace.

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