Monday, February 9, 2015

M is for Milestone, Miracles and Mmmm sandwiches!

I wrote this last Monday and the whirlwind that has followed, meant I have only just realised I didn't post it!  He has loved being at school and wakes excited squealing that he can go to school again! But I leave you with last Monday's ramblings....

See today was a pretty special day in our home - We lined up not two, but three kids for their 'day 1 of school' photo. This day Sam too was in the photo aged 5 years, 6 months and 27 days old.

It was momentus - no nerves or pulling of heart strings as last child leaves the nest, just total pure delight and wonderment that this day was happening.

This journey has been one of many miracles - where the unexpected did happen and the expected often didn't. Unsure if he would survive birth, pull through after operations and infections, uncertain if he could learn to walk .... And the list goes on.  Today as he ran across the school courtyard my heart was full to bursting as the miracle ran in front of me.

'Mmmmm sandwiches' is what Sam said as he 'ate' his lunch sitting with all his new buddies. If you weren't paying attention you would swear he was eating. But tonight his Thomas the Tank Engine lunchbox is still full on the bench and he is hooked up to his two pumps for 14 hours. I smile at his creativity and courage to be just one of the kids doing normal stuff at school.

So a big day for us today - happy and tired and thankful.


Wednesday, January 28, 2015

Monsterville Visited Today!

So Sam has his new central line embedded in his chest.  The old one is in a pot for 'show'n'tell' - truly amazing how such a teeny tiny tube can sustain a child for 3+ years.

Sam went into theatre a little anxious.  He is now old enough and able to put words to his thoughts.

'Mum, I don't want to go to surgery - can't they just change my line on the ward please??'. 'I don't want to lie down under the big light in surgery - I'm frightened!'.

But we got him in with the fabulous anaethetist singing 'Wonky Donky' and agreeing with Sam's attempt at control: Sam, 'I am NOT lying down, do it sitting up!'. So Sam sat on my knee and the magic juice was given and he fell asleep on my knee and then we transferred him to the table..... then I left him in their hands and went and switched off knowing there was nothing I could do.

2 hours later and I head to Recovery and I hear him in the corridor - oh dear, as so often is the case, Sam is now in Monsterville as the reaction with the drugs had taken over!  He was shouting and telling anyone that spoke to ,'Shut UP!'. He was pulling on anything and everything, throwing things, rolling, screaming, writhing.  We got him up to the ward and tried to put the probe on his toe so as to monitor his heart rate etc.... it took 2 of us fully swaddling him in a blanket and pinning him down to get it on and a reading done - and this was done after 10 mins of trying negotiation, bribery, cuddles etc... At one point he shouted, 'I am going to run away and you will NEVER find me... ever!'.  I asked him where he would run to and he said, 'I'm going to run home' I smiled at his logic I explained I would find him...... finally after about 45 mins he asked for hugs and I sat holding him for 10 mins with him just wimpering and relaxing..... then sleep!

A 2 hour nap and Sam awakes totally happy and back to himself.  He doesn't remember a thing and was very happy to stand and check out the cars out the window and chat to his uncle Eddie that popped in.

Hoping to get home tomorrow as all went really well.  We will need to pop in in 3 weeks as the cvl has two lots of stitches anchoring it that will need removing.

As always, I am so grateful to fabulous friends that have opened their homes and lives to our girls - they are having such a fun few days at the beach/pool that it will no doubt be a let down coming home.  But I can tempt them home with the promise of Nana's birthday bbq with the extended family tomorrow night - good food and family is always a good card to play!

Thanks everyone - for praying, for caring, for texting, for having our girls, for the medical team that are so skilled to do crazy surgeries on my boy.... to Sam for being such an amazing boy that puts up with so much.... to God for sustaining us all.

Sleep well. X

Sunday, January 18, 2015

Goodby to a very special Grandad

On Friday we said goodbye to a very special Man..... I love this photo taken about 3 and a half years ago.  Both 'men' totally absorbed in the moment.  It's been a busy, special and sad week looking through photos and making preparations for the funeral.  Sam obviously didn't understand it all and we had many interesting discussions with him.  We had a very funny moment  when I was driving with Sam past the care home where Grandad had been.  The dialogue went something like this:
' Mum look, that's Lansdowne where Grandad lives...... no wait, he isn't there any more..... he's in heaven with Jesus...... What kind of car does Jesus drive?'.  It was truly hilarious and Sams perspective always welcomed!

We are off on a 5 day beach holiday today - all in need of a break and looking forward to it very much - sun, sand and no internet!.  When we get back Francis is off to L.A. for 10 days, and on 28th Sam is scheduled for a surgery at Starship - so it looks like 2015 is starting again!  Sam's surgery is just to switch his CVL which is embedded in his chest.  It has been in for over 3 years, which is fabulous, but they want to change it as a scheduled surgery before it breaks and is an acute admission. We are hoping it is just a simple over-night stay, so we can get back into home rhythm before Sam starts school on Monday 2 February - what a big day that will be!

Right off to pack for holiday - Sam says he is packed and ready to go - he has his Bee, a bag of cars and a fan (it is hot) - oh if only it was that simple!


Wednesday, December 24, 2014

Christmas Eve

Oh so many changes in the past 24 hours - yes we will be in hospital for Christmas.... 50/50 chance as we have to wait and see... No you cant get home.... oh sorry Sam isn't responding to the meds so we have to increase them so you will be staying etc etc...

Then this morning our favourite urologist wandered in and was very decisive that the catheter could come out and we can can pop in tomorrow for his antibiotic 30 minute infusion, but he saw no reason we can't go home!  Woo hoo - we are all very delighted after resigning ourselves to another Starship Christmas.

Sam still has debris in his urine so they have increased his dose of IV antibiotic infusion.  At 4 this afternoon he will have a 'trough' - they take blood to check how the drug is affecting him, then he will be set up for his 30 minute infusion.  After that we will head home in time to hook him up for his overnight TPN!  

Right now as Sam plays with his cars on his hospital bed, Francis and the girls are at the movies enjoying 'Paddington' - well I'm guessing the girls are enjoying it and Francis is enjoying not being at work.  Tonight we will head to a 7pm Christmas Church service and tomorrow morning we aim to have a lie in (um... well anything is longer than the 4.30 am wakes up in this place due to pumps alarming etc), a lazy family brunch and gifts and then on to more food for a Davy Christmas lunch, with a pop in to Starship for Sams infusion at 3pm.  We have to have a nurse visit from Boxing Day until Dec 30 for an infusion, but this is the pay off to keep us out of hospital. 

Every year the girls groan and roll their eyes when they are asking me what I want for Christmas - my answer is always the same, 'I don't want anything but to have the 5 of us together - the people I love the most'.  They now parrot it back at me, but this year I truly mean it more than ever!

John 3:16 'For God so loved the world He gave His only Son, so that none would be lost but have eternal life'..... This is what we celebrate at Christmas and my heart is full as I think on that amazing truth... and whether in Starship or home, that truth is the same.  We are grateful that we will all wake in the same place tomorrow as we stoop and celebrate all that God has done in giving Jesus to walk alongside us in this life.  

It has been a hard year on lots of fronts - disappointing surgeries that didn't work, lots of long hospital stays, Francis' Dad has been very unwell and the challenge of work/life balance has been hard (& I failed miserably) amidst a busy family. So we crawl to Christmas weary and a bit jaded. We look forward to time to stop and breath and enjoy each other and to take stock and ensure we do what we can to make positive changes.  I hope to disappear for a few days to sleep and leave Francis with the kids - I am so looking forward to this!!

I hope this holiday season you can look back at the highs and lows, spend time being refreshed with good relationships and lots of laughter, ready for the challenges of 2015.

Thank you for your care and prayers for Sam and us - X Shirl

Sunday, December 21, 2014

A Christmas glitch....

Last night Sam giggled his way through our Davy Christmas party with 20 people present, cousins, food and much crazy-i-ness.

Then he had a really rough night with high temps and vomiting.  We thought it was his urine infection kicking off, but both urines are clear and I have an inkling it is something different/more serious.... so sadly he is sitting in Starship Emergency Department waiting to be seen.

Girls are disappointed as they anticipate another hospital Christmas, I'm so tired after a crazy few months that Francis has taken him in so I can sleep this afternoon.  I will be swapping with Francis at 8am tomorrow so he can go to work - he finishes work on Wednesday before a 2 week break.

So the tree is up, the Christmas music has been playing, but it's about to be turned off so I can 'nana nap'.  The girls are so good at reading/hanging out and being ignored that I should get in a couple of hours.  I hope by the time I awake there is some news as to the source of the infection and a treatment plan..... but it is Sunday (read skeleton staff on at Starship) so all will be revealed in due course.

I don't like seeing Sam so hot and then he gets really babbly and slightly delirious.... dear boy, his life is not easy, wish I could make it easier for him.


Tuesday, December 16, 2014


Sam got home on Tuesday evening, after an iron infusion and a new plan around his central line care.  We now put this little disk (which is impregnated with something to kill bugs) at the entry point and then use a 'second skin'.  These dressings are amazing and are so thin but stick like glue.

So he woke up on Wednesday at home, which meant he could go to his Kindergarten Christmas party and graduation!  He was such a star - he was shepherd and managed to stay focused and do the right things for the duration - no mean feat when there are around 100 kids in various stages of nativity dress-up with a medley of songs.  It was truly a delight to see them all in action and I felt quite emotional as he 'graduated'.  Such a milestone for our little man and we are so indebted to the love and care of the team at Elim Kindergarten who have nurtured and loved Sam.

I'm afraid the photos aren't great as I forgot my camera and only had my iphone. He is the cute shepherd in the middle!

He has been doing great at home, until Saturday when his urine turned to custard, so we popped into Starship with a spec on Saturday.  He has grown an e-coli, but they are unsure which strain, so we are monitoring symptoms with extra bladder wash-outs and daily gentamycin bladder wash outs too.  It does sound so boring as I read what I write.... just more of the same, but we value your prayers and hope that with info you can understand a little.

Again this year he is not in love with the large white bearded fellow, so won't be any cute pics of him with Santa any time soon.  I may try to record his screaming for you!  

He is going to have another trial morning at school, before school closes on Thursday.

I leave you with his 'graduation' photo - on the last day of school the child is presented with their graduation cap, which he wore with such pride all day!  So he is off on another adventure next year - to a big school, with Ange his faithful carer moving on with him as his Teacher Aide. She truly is a God send and a very dear woman that has become a part of our family and especially Sams life.

10 days to go before we celebrate the coming of Jesus -we are loving the season and the reason and enjoying being home doing simple things.  May you all be able to relax and breath and enjoy some quiet this Christmas.

Saturday, December 6, 2014

A Crazy Month

So it is Saturday evening, Dec 6 and our family is scattered far and wide. Sam was admitted to Starship on Wednesday due to a weird angry area around his central line (see pic)

It just appeared on Monday as a pink area and then got worse and so I sent off this photo to Starship and we got the call to come in.  Sam has been totally well and happy with no other clinical symptoms.  He was started on IV Abx and as of today it looks like it is starting to improve.  Sam was at school for his first morning visit, as he is starting school next year.  Get a load of the cuteness in his school uniform:
He was so proud of his uniform and when asked in Starship by his consultant what the H stood for, he said, 'H is for Handsome... long stick, long stick, twig!'.   He doesn't go to Handsome school, but Howick Primary School and if you get your finger and draw a 'long stick', then another 'long stick' in the air, joining them with a 'twig' you will see that he had soaked up his letter of the day and loved learning.

He was so happy to be showing his uniform off to all the staff at Starship.  It is no small miracle that he is wearing a school uniform and tears of thankfulness brim in my eyes just thinking about that.   

Sadly with him in hospital, I was with him during the week and Francis is with him for the weekend. He could have escaped for a few hours today but I woke with vomitting and have been bed bound today and the girls have kindly been whisked away by friends to have a last minute planned fun weekend.  

So I am home alone and it is very quiet...... and lovely!

On Thursday evening we left Sam in hospital with Uncle Eddie having a 'boys night', and we went to our girls prize giving.  We are so proud of our girls - it was a real delight to see them both receive awards this year.  Jasmine won the year 8 Public Speaking Cup and Candace won the Year 6 Trophy. Jasmine wrote her speech totally on her own back in August when we were in the midst of a hospital admission.  Often our hearts have ached at how we don't give the girls the time we would like to due to Sam, so it was a precious moment to see that they have done so well amongst a really tough year. We know that Sam is in the hands of his maker and on Thursday we were reminded again that the girls too have been looked after by God this year.  We are so grateful to the Elim School community that has watched out for them, that have been aware of their situation and for the many dear families that have loved and looked out for them and enabled them to flourish.  

Sam is to be reviewed again on Monday, but they are being very cautious about this as it's a strange thing that hasn't happened before.  The various swabs that have been sent to the lab have grown nothing of consequence, so in having a big change like this with unexplained cause, people are nervous to let us go home.  Sam has his Kindergarten prize giving on Wed and his last day on Thursday, so we really want to get him out for these celebrations.

We are all tired and weary from a busy few weeks, from Francis working abroad (been in Israel and Australia last few weeks), from me working (have loved being in a different stimulating environment) and hospital dropped in to the mix.  The last 6 weeks Sam has been at home has been lovely, albeit with one UTI that required IV abx for 7 days.  It's great to be able to do the meds at home, but it does put pressure on as have to watch the clock and keep to a tight schedule.  The alternative is hospital, so we work hard at keeping him at home, but it takes its toll on tiredness.

Summer is the hardest time of year - long days of sun and bbq's, but we have to stick to Sams regime and that is getting harder as he wants to be a part of running around and doing things, but we still have to fit in 14 and 16 hours of having him hooked up - there is no flexibility, so just deciding to do a family picnic or pop to the beach is out of the question.  Winter is easier because the weather is grotty and sitting at home with a DVD on is easier for keeping Sam (& girls) happy and his cares ticking over.  We are thinking about buying a caravan, so that we could have some flexibility to get away, if even just for a couple of days at a time - to have all of Sams supplies set up, with a fridge available is the only safe way for getting away..... so we are trawling Trade Me and trying to figure out how to make the most of the coming summer.

I leave you with a humourous story that, if you are having a down day, may just make you feel better about yourself!
A couple of weeks ago on a Sunday morning, I took the kids to church (Francis was in Israel).  10 mins into the service and the guy up the front said, 'turn around and say hi to those sitting around you and make some new friends'.  At this point the lady behind me taps me on the shoulder and says through a beaming smile, 'Oh it does warm my heart when I see Grandparents bringing their grand children to church - how old is your grandson?'.  I have to admit I was rather stunned/horrified/aghast at this and spluttered (possibly too vehemently), 'He is my son!'.  She may not have heard me over the laughter of my daughters!  I have to admit I have since purchased a new large tub of anti-aging eye cream, but I fear it is all a bit late - but I'm not going to give up to 'age' without a fight!

I leave you with a photo of Sam and his best buddy Caleb - he came for a play date and they were so cute!

Thanks for your thoughts and prayers,
X Gran!