Tuesday, March 17, 2015

A Transition Team Meeting!

Today I met at school with 12 individuals - some from the Ministry of Health, some from Ministry of Education.  Sam has been at school since February and it was time to talk about the transition to school and for the Ministry of Health physio and O.T. to step away and hand over to the Ministry of Ed physio and O.T.

My initial thoughts (as I sat and  looked around the table) were:
1.  Man Sam keeps a lot of people in work!
2.  I don't get why we have to swap over to new people when he has relationships with people that have worked with him for years and know how to motivate and push him.

Then one by one each person introduced themselves, their skill/profession and how long they had worked with Sam.  I felt quite emotional as they went around - some worked him him since he was 2 and still in a standing frame unsure if he'd ever walk, Ange explained she was his current Teacher Aide, but had been his TA at kindergarten and carer at home since he was 5 months (I was welling up about now), some haven't worked with him but will be 'picking him up'  now that he is under the Education Dept....

I opened with the parents perspective on how Sam has transitioned.  I explained how Sam wakes squealing with delight wondering what letter they will do at school today, or that it's library day!  I explained that because of the hard work of the people around the table is hasn't felt like a transition - he just woke up one day and ran into school and hasn't looked back.  There were discussions on various ways we can help him get physically stronger through specific exercises and how we need to create times of quiet for him, as he is so desperately social but he gets exhausted trying to keep up and not miss out on a thing.

So it was a very special meeting and after school Sam was so excited to tell me they had done the letter F today and then sang the little ditty that goes with it.

Since school started, it hasn't been plain sailing - he has had 3 admissions - 1 for a broken central line (that was kind of crazy/scary and I just didn't write about it!), 2 for urinary tract infections.  But with the support of Starship and the community nurses, we are managing to mostly keep him at home and having daily IV antibiotic infusions.

A funny story from his last admission.  One of the consultants was asking Sam about school and said, 'What's the best thing about school Sam?'..... Sam answered, 'Thomas' Mum Natalie'.  Lots of laughter and then the Dr asked what was she like and Sam answered, 'She's blonde!'.  I have since met this lovely lady, and she is indeed very nice and hangs out before and after school and helps out on the playground.

On Saturday Sam had a full eye check up as it was wondered if his lack of concentration is due to vision.  Well, his eyes are very good, but he is long sighted and more so than normal for his age/stage.  He has trial specs for a month, and he will be watched in class to see if they help him. From my untrained eye (no pun intended) it would appear that most of the boys in his class have severe long sightedness, if lack of concentration is one of the symptoms!  Joking aside, we are happy that his whole being is being looked after so well and if specs help, fab!  If they don't at least we have tried and we will adapt.  I am constantly amazed at the patience and skills the teachers and teacher aides have - I truly admire anyone that sets foot in front of 20 little individuals and seeks to inspire and herd them for 5 hours.... phewf, tired just thinking about it!

Sam currently has a pseudomonas in his left kidney which is proving rather problematic to shift.and is resistant to all oral abx.  We await a plan......

BUT, my plan is to get on a plane and escape to  Perth, Australia on Friday!  My little bro' and his gorgeous wife and boy live there... and I figured it was time I met my nephew who is now one! Francis got back last night from Tanzania and is due to head to Myanmar in a couple of weeks, so he is doing Daddy Day Care so I can escape for 5 days.  My plans are just to chill, sleep, eat, read, hang out and repeat......

So it has been a busy term juggling work, hospital and growing girls... but I leave you with photos of Sam hanging out at school - desperately trying to fit in and just be like all the others...... the thing is we all know he's rather special!


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'.....as 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.