Monday, November 21, 2016

Bugs gone, new ones come... sigh!

So Sam has had a good week with him getting home on Thursday night with his new port in his chest.  Friday he braved school, but I picked him up early as the nurse was coming to administer his drugs at home at 2.30.  He so loves school, but I am conscious he slots back in having had such big gaps out of his learning and the social side of it. He has mentioned some 'friends' but also some kids that 'laughed at me'.  I think the nature of his fractured world is going to become a larger player in his development, physically, mentally and emotionally. It was sweet to hear the calls from around the play ground and class rooms as I walked him in to his class, after a 4 day absence - students of all ages calling out, 'Hey Sam', 'Hi Sam welcome back' etc - very heart warming.  His school and staff are truly amazing - so understanding of him and his unique needs, both medically and educationally. I don't believe for a second anyone is being mean to him, but I think Sam is starting to realise his differences and this year has been hard for him with so many long breaks away. He mentioned last week that he wanted to go the toilet with the other boys, and not go to his own bathroom.  He so wants to fit in that he is becoming aware that he can't even go and pee with the boys - lots of challenging conversations to come!

Sam had his last nurse visit today, so he had his last IV antibiotic for the urinary tract infection and it all seems clear.  Sadly yesterday he seemed to start a rattly cough, totally out of nowhere.  Last night was tough for him, waking to cough every hour or so.  Today he had a booked appointment with his main Paediatrician, so after a thorough going over on general things, his chest was listened to and he came back with more antibiotics.  We have increased his chest physio to 3 times today and he hasn't had any temperatures or runny noses.  Our instructions are to run the oral antibiotics but if Sams fruity cough hasn't improved within 48 hours, to venture back in to Starship.  Oh how I love that we have Starship and all the skills available, yet don't love the frequency with which we call it home.  I am hoping and praying that we can keep him home.

I have just finished reading a rather alarming article in the NZ Herald titled:

The Big Read: Is the world on the brink of an antibiotic apocalypse? 

It didn't make for happy thoughts, as Sam lurches from one antibiotic to another, all the while becoming resistant to various ones. So I leave my concerns with God and just go about caring for him as best as I can. Quality of life is what matters today... for us all right? I am reading a book on Prayer at the moment - a challenging read as it raises many questions and doesn't have neat little answers. But I have found it comforting as I pray and leave my daily burdens with God, not that answers I want come about or even that things necessarily change, but it puts me back in the right order of things... I am just a frail being on earth for a short time, reliant on God to give me breath each day and the strength to get through it. I am so thankful for the joy that comes with the knowledge of Gods love encompassing and watching me and that it isn't dependent on me being good or clever enough or on external events... so as I wash up bottles and change milk feeds and give meds tonight, I do it with the confidence that our life and times are in His hands.

I've just re-read above and realise it can sound so trite and self-righteous.... I don't mean to.  I guess when life falls apart around you, which it does with surprising speed and frequency in our home, all the fluff and bubbles disappears and the real stuff remains.... and for me and my experience, it's been God and the words in the bible that have rung true, tangible, unwavering and peace giving amidst mess and exhaustion.  It doesn't mean anything has changed or improved in the daily events, but calm and courage that can't be humanly created or explained constantly amaze me.... so I am so very thankful as we head into this Christmas season for Jesus - celebrating God coming to show himself to us in our every day messy lives.

At the paediatricians today, Sam and Dr shared jokes with each other.  Sams was stolen from Zootopia, but then Sam ends it with a slow sloth smile: 
Q: What do you call a 3 humped camel?
A: Pregnant 

Drs joke: (This joke was shared for 2 reasons - Sam loves his bee and we had been talking about toileting/peeing with Sam!)
Q:  Where do Bees go to the toilet? 
A:  The BP Station of course (For those non kiwis, BP is a petrol station chain in NZ... not sure if it world wide.... yeah, jokes are never funny when they have to be explained!).

Nite nite
X

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