Thursday, February 13, 2014

Two more sleeps... and a UTI!

So in 2 more sleeps our girls are VERY excited about getting on that plane and heading off for a 'Sam Free' Holiday - read, 'no limitations, clock watching, interruptions, hospital, health visitors, parents attention etc et al'..... I am so excited too, but Sam has been not 100% this past week and today we got the results back from a very suspect urine sample that I dropped in to Starship on Monday.

Sam is growing a bacteria that 'on paper' seems to be resistant to most oral antibiotics - it's a new bug for him and it needs treating.  Our great Nurse Specialist realises that our trip to Australia is important for the girls, so has opted to give us one oral antibiotic that may work to clear it, but if not, it will keep Sam from getting unwell with the infection and hopefully time to get to Australia and back before an admission is needed.

Clearly if he gets unwell when we are away the amazing team that will be here will not hesitate to do what is appropriate at the time..... and for that reason I am actually very peaceful to still go.  I am learning to trust my God given gut instinct as so often it's been right when it comes to Sams health.  Many other times I've had a gut dread that something was really wrong and I've stuck to my guns (stubborness is one of my strengths/weakness depending on perspective!) and I've been glad I had as something has been wrong - this time I have every confidence that he will be well loved and cared for by the nurses moving in to our home, and that he is happy and well in himself.

We will miss him so terribly (well me probably much more than the others), but I am excited to hang with the girls and my husband - it will be amazing and weird all at once.

We will be praying for his nurse/s and kindergarten teachers and friends that will love him whilst away, for this bacteria to respond to the medicine we have access to so that a hospital admission is not needed before next Friday (!) and for our girls tanks to be filled up to overflowing!

The girls are hoping I won't embarrass them too much on scary rides and that they get to hold a koala - ahhh the joys of childhood!

Much love X S

Sunday, February 9, 2014

Its been a while!

Um, Happy New Year!  Yes the blog has been silent, as we have had a restful and fun family time over the Christmas holiday period.  The girls went back to school last Monday and Sam started again at kindergarten, so routine is starting to take over again.

In brief:
Christmas:  Great 12 days at Maungawhai, inspite of Sam having a UTI.
Hospital: Jan 4 - 7 with a stubborn UTI, but we managed it for 10 days doing IV abx at home.
Quick Escapes: had a few days in Tauranga with friends, then long weekend in Rotorua with cousins.
Summer Fun:  Lots of visitors/family/cousins popping in to stay/play and hang out!
Poop Recycling: Working a treat!  Sam lies their patiently while I do my thing with the syringe/catheter and then a few hours later he is elated as he comes running with the announcement he has done a poop and needs a new nappy!
Needs Assessment:  A necessary part of having carers helping out, which happened in mid January and took a lot of time to sort out... again...
Staff:  Two night sleepers are moving on to med school in Dunedin and one to a nursing job at Starship, so I have been recruiting and have found a lovely replacement who starts next week.

Sam is now booked to attend Kindergarten 2 mornings and 2 full days per week - it's so good for him and he loves the stimulation and friendship.

Surgery:  March 5 is pencilled in for his big surgery - ilieostomy reversal (joining up small and large bowel for the first time since it was severed when he was around 1 day old!).  It has huge implications for Sam and his health and we are amazed and delighted that we are in this position of such profound progress - I can't help but smile and thank God for the daily miracle of life.

Next week:  Please think of Sam especially from next Saturday 15 Feb - Thursday 20 Feb, as he is staying at home with a nurse, whilst Francis and I whisk the girls off to Australia for a break!  Summer holidays are not that much fun for the girls - I find them stressful as the girls are wanting to do fun things, but the beach is no fun for Sam as he can't get in the water (can't get CVL wet) and he hates the sand etc... so although we had a good holiday, most of it was one of us with the girls having fun, the other with Sam having fun.... so through the kindness of friends and Francis' airmiles we are heading to the Gold Coast for some fun!  Francis and the girls will stay on for the week, but 4 days is long enough for my heart to cope without Sam and with the practicalities and limitations of arranging 24 hour cover.  We wouldn't go for one second if we didn't trust the amazing ladies that love Sam as their own, and have the skills and care to look after him.  He hopefully will be distracted by his usual routine of full days at kindy and dvds!

The last few nights Sam has not been great and this morning he spiked a temp and his urine is dodgey again... so tomorrow I will head in to Starship for his monthly blood tests and hopefully get some extra meds on board and him stable before we pack our bikinis!

I leave you with some cute/entertaining photos of our little guy - some are with/wearing Christmas gifts, one is at the kindy Christmas pageant which he was fed up with (he stayed like this for a 3 song medley - always one in every group right?) and some are at Christmas parties with famous faces (for non kiwis- that is Valerie Adams multiple Olympic Gold medal winner)!

Love to hear how you are doing and what is going on in your lives.

Very best wishes and thanks for walking, watching and praying with us we embark on 2014.  We are certain that our God is bigger and greater than anything we will face and that fills us with joy and hope!.

X Shirl