Monday, October 17, 2016

Week 2 of school!

Sam was so very excited to have last week at school.  Week one of the last term of 2016.  It all seemed to go well until Thursday night when he woke every hour complaining of a sore willie and crying out in pain begging me to give him a bladder wash out.  Not much sleep for either that night, but I drugged him up with Pamol and sent him to school, as it was Book Week, culminating in fancy dress on the Friday of your favourite book character.  

Historically I have gone to great efforts to deck my kids out in fabulous outfits for school (more about me looking good than them!).... well perhaps I have grown up a tad or perhaps I am just a bit tired - either way I raided my sisters dress up box and told Sam to find an outfit he liked! Lazy Parenting 101 completed!  I had hoped he would go with the 'Where's Wally' outfit or the lion or dog... but it was the Star Wars outfit that won his vote - and thankfully no questions were asked as to what book was he from as that would have received a blank stare - come to think of it he has never seen any of the movies, but it is amazing the influence of playground talk (Star Wars Countdown cards) and older cousins.  I leave you a photo of the non-book Book Character named Sam Davy from Star Wars (& yes the Mother of the child in the Red Cape did good - rock on Little Red!).

I had to be in Starship on Friday morning for a meeting, so I had Sams urine sample in to the lab by 10am. Sam got to school for 8.30am, but by 10.30 the pamol had started to wear off and Francis brought him home. But it meant he got to be a part of the fun and enjoy his week. Thankfully we managed to start oral antibiotics for a uti by 5pm on Friday and within 24 hours he was already feeling a whole lot better.

So he has been back at school today, albeit only for a half day, as he had a dentist appointment at Starship this morning.  Not much to report there as he is so oral averse, the dentist didn't manage to do much, but she did spot he has one more lose tooth, so the tooth fairy is on call.  Next time Sam has a GA, the dentist would like to pop in and give his teeth a good clean and look over.

Tomorrow he will head to school for the morning and then we need to be on the road by 1pm to get to Starship for a psych assessment.  

Next week he has 1 clinics - Respiratory on Thursday.  The following week he has 2 clinics - Gastro on Monday and Psych on Tuesday, but we are trying to get at least 2 clinics on one day.  It seems like a really easy request, but the various consultants work at many hospitals and private practices, so may only be on site at Starship one morning a week.  It does mean that our petrol bill is horrendous, but not much we can do about that - I think Sam is still a bit too little to be pillion on a motorbike!

This week we are very excited to have more family coming to stay - Aunty Jude and Cousin Jono (we don't use these salutations and formalities when generally chatting, but more as way of introduction to you!) - All three kids are very excited, as am I!

Right, off to do antibiotics and then bed - this course is 4 x day for 1 week.... but orals are so much easier to manage than IV's.... and it is very cool he is responding to them! 

Tuesday, October 11, 2016

Haircut, Home and Holidays!

Sam had a great week at home, during which it was school holidays and his cousins came to stay!

Sam isn't a very physical kid - I don't blame him, he has had tubes yanked out of him and at times of wrestling with his older sisters his 'poobag' has gone AWOL and the ensuing mess was foul.... so all of these extra attachments and the lessons from what happens when they go wrong, leaves Sam slightly reserved.  Well, to break that cycle, it seems throwing in a slightly older cousin that he is desperate to keep up with and hey presto, a 3 km walk is totally possible!  

It was such a fun few days with the cousins dancing to you tube clips on TV, heading up to the local flying fox, walking down to the beach, movies at Sylvia Park, Musical Statues and Hide'n'seek.  Sam laughed and giggled his way through the days, which was so fabulous considering how many solitary days he has spent quietly isolated in his hospital room this year.  So we had a fabulous week with Sam at home.

A haircut, or more accurately a trip to the Barber with Dad and he still has some curls left - looking good Sam!

This week he has been so happy to be back at school.  Today he had a clinic appointment at Starship and he has a couple each week for the next 3 weeks, so he will miss some school, but nothing compared to being a resident of the ship!

It is 'Book Week' at school, so tomorrow I will be on the scrounge from all and sundry that have successfully negotiated a book character dress up as I'm feeling a tad unmotivated to whip up a 'Cat in the Hat', which is what Sam is talking about.....  I will post a pic on Friday night to see what he managed to go as.

It is so so nice to have Sam sleeping happily next door in his room.  Every night before bed he asks for his bible story and then we pray and ask Jesus to help keep infections away and to keep him well so he can be at home and school...... that would be fab.

Sleep well. X

Friday, September 30, 2016

'A change is as good as a holiday'... or so the adage goes!

Yay.... we are on holiday!  We had a big change today as I escaped Starship with Sam in tow headed for home ....and boxes of antibiotics and other supplies!

Tonight he is asleep hooked up to his usual feeds and bags and I have 'til 11:30 pm to stay awake as he needs an IV antibiotic then.... so what better thing to do than update the blog!

The last week he has had a mixed bag of procedures and symptoms needing sorting, but then he bounced back and the only thing keeping him in was his high fluid outputs and antibiotic doses.  The first seemed to have been resolved overnight with an increase in loperimide and his outputs dropped. And the antibiotic doses can be given by me, so I have come back home with the recipe and the next ten days will see me responding to my phone when it alarms every 8 hours to remind me to give him his dose.

The logistics of a hospital stay, managing the girls holiday plans and normal life events is quite a juggle and always open to change.  On Thursday night I was sitting with the girls and Grandma (Mum) trying to sort out the next days plans.... it was all sorted until another text came in from someone which meant plans needed to change.... the girls are so patient with so many changes, so I reminded them of the adage, 'A change is as good as a holiday'.  So we had another 'holiday' right then and there.  About 30 mins later I realised there was another piece of the puzzle I hadn't factored in, so I explained to the girls that they were so lucky and it was time for another 'holiday'.  I think we had 6 holidays on Thursday night just sitting on our couch - didn't even need to pack a toothbrush!  It was a lovely 10 days having Mum/Grandma here and so nice to be able to change plans and stay in hospital, if needed, knowing she was at home.

This coming week Sam has 2 clinics in Starship and the following week a couple more... so we are back on the road to 'normal'.

Tuesday is also the day his cousins come to stay and Sam is SO excited!  Aunty Elaine, Uncle Justine, Taylor, Harrison and Mackenzie are coming for a holiday and the medical teams had the pressure from Sam to get him home in time. Literally as we left miscellanous staff were shouting out to Sam, 'Have a great time with Harrison!' - Sam had told all and sundry about the impending visit and that Harrison would be bringing his 'fart piano' - Aunty E please dont disappoint as Sam has visions of a duet with his 'fart gun'. 

I am a tad anxious, as the last time I brought Sam home it was only for 20 hours.  I really really want Sam to have a break, actually we all need a break.  I know I don't see the big picture and I just have to walk each day faithfully.... and that's ok (mostly). I am learning instead of getting frustrated and worried to just pause and pray.  I do know God hears every word that I speak and ask of him.  As I hugged Sam tonight and prayed for him, I couldn't help but cry as I begged God to please protect Sams body from more infection and to help him be strong.  As the tears silently rolled down my face, Sam asked if I was sad... but I answered honestly and said I was a bit sad that he had to be in hospital so much, but mostly they were tears of joy that he was home and tears of thankfulness that God loves him so much and is watching over him.

Thank you Lord that you see every tear that falls from our eyes, every pain in our hearts and you have great plans for each of us. Thank you for the peace that comes with that realisation, even though it makes no sense.  Thank you that I can't understand you, for if I could that thought is too terrifying... I need someone bigger, wiser, kinder, more 'everythinger' than me... and that is where true peace and comfort is.  


Monday, September 26, 2016


I sometimes feel overwhelmed as author of 'Sams Blog'.  You know that feeling when you have watched the news and had a sinking feeling in the pit of your stomach at the state of the world after viewing one horrible world event/disaster/human tragedy after another..... sometimes I just can't bare to watch or read any more and switch off from the news for a few days so that I'm not overwhelmed by the carnage and sadness in the world.  Well sometimes I feel that you the readers must feel the same when reading Sams blog - ongoing carnage and sadness!

Sam came home on Sunday around 1:30 pm. I was so glad to finally be having some happy news for you all!  He had a really happy afternoon and as evening came around I delved back into his routine of hanging fluids, priming pumps, putting in catheters and drains.  He settled well and was so happy to be back in his room.  He kept asking me to sleep with him (after having a sleeping companion in hospital every night he normally takes a few days to adjust to being on his own) so I curled up beside him on a mattress - well that was until around 1am when he woke clearly distressed.  His temperature was 38.4 but after about an hour he settled with panadol on board.  But that was short lived and we had broken sleep, high temps and a very sad wee boy from around 3am til I got him in to Starship around 11.30.  I know that seems a long time to wait, but I was happy he was comfortable and I really wanted him to get his over night fluids into him.

He arrived at hospital with a 39.2 temp and he was very unwell and red eyed from lack of sleep.  By the time various medical people came in he was very unhappy, actually down right physical as he fought off procedures.  I stayed with him until around 1pm, when Francis took over, as it is school holidays and I took Candace and Mum out for the afternoon.  The girls were so disappointed Sam had to head back in as we had mapped out daily holiday plans with great excitement the night before.

This afternoon Sam had ultrasounds of his chest drain site/neck surgical site, chest xray, blood cultures and urine samples taken.  No obvious source of infection had been found, but he has been started on antibiotics until more information appears.  It could just of course be a random virus.  At 6 pm I spoke to Sam and he had just arrived in his room back on Ward 26b and had a temperature of 40.2!

I was so frustrated and mad with God through the night. I am sad that Sam has to endure more discomfort of procedures and has to fight another something.... we would so love him to be able to be home and run around and enjoy life..... I know my perspective is very limited, as are all individual perspectives, but I was so looking forward to being home with all 3 kids these holidays.... hopefully it is just a simple virus and it can quickly run its course.  Tomorrow I will head in first thing so Francis can escape for the morning and then we will swap again in the afternoon to juggle work/girls commitments.

I would totally understand if you felt you wanted to switch off 'the Sam news' for a few days so you weren't hit with the reality of his life and could just enjoy your own life for a bit.  I know sometimes I wish I could! I actually feel stink writing about it, as I wish I could tell you all loveliness.  And then the flip side of that is I just want to hang out with him, whether that is in hospital or home.  I do know my feelings are totally unreliable and it's ok to have 'bad days'.... I am looking forward to sleep and the hope of a new day tomorrow, where God promises to never leave us and that his mercy is fresh and new, no matter what kind of a mess/doubt/yuck we got in to today.  I do hope and pray that Sam continues to get strong not just in his body, but in his heart.

Sunday, September 25, 2016


YES, Sam finally was discharged this morning!  He was so excited to be home knowing he can sleep here and that he can wake up in the morning when he likes and not at 6am when the 'blood lady' comes to do a finger prick blood test!

He has been home playing with his cars all afternoon.  Each time he finds a car he hasn't seen in a few months it's like Christmas! His girls are very excited to have him home and lots of cuddles and tickling and giggling going on.

Even though he was in hospital, last week he got out to school on Thursday and Friday for the afternoons.  Friday was the last day of school for two weeks as it is the start of the school holidays. When I took Sam in his teacher took me over to show me something very special and precious.  The children in Sams class have been working all term on making a quilt.  It is based on a book titled, 'A quilt for Kiri', by Don Long. This book is set in New Zealand. Kiri’s grandmother lives in the Cook Islands, and Kiri is devastated when she learns that her grandmother has died. When she receives a parcel in the post a few months later, Kiri is delighted to find her grandmother’s old quilt. She and her mother lovingly mend and wash the quilt, and it helps her and her father to remember grandmother and share special memories together.

Well the wall was covered in a beautiful quilt and the title of 'A quilt for Sam'.
Each child in his class has created a square and it is has their name on it.  The quilt has been beautifully quilted by parents/helpers in Sams class and will fit a single bed.  It means that when Sam is in hospital he can take his friends with him. In the middle of the quilt is 'Te Whare Akonga', which is Sams classroom name, which means 'The House of learning/pupils'. I was so touched by their kindness.  It has been a long hard winter and there is something so moving knowing that your boy is well loved.  Also on the wall there is a photo of Sam with the school Principal and the Deputy Principal. They both have visited Sam regularly over this admission and this photo was taken on Tuesday when they both popped in again.  So generous with their time and gifts - again, peoples kindness makes the weary heart glad!
It is school holidays and the girls have various plans to attend camps and head away with dear friends on adventures.  I hadn't planned anything, as planning requires energy and it's been kind of pointless planning things for a Sam in the mix.... Sam still has various clinics to attend - Friday is gastro clinic and next Monday he has to be back at Starship for another clinic.... so we will just go with the flow and enjoy each day and make it up as we go along.
I am so hopeful and prayerful that infections will be kept at bay, that his body copes with the feeds (& as we try to increase them over the coming week) and that home can be Mellons Bay and not Starship for a while!

Thursday, September 15, 2016

Disappointing progress

Sam has been recovering from this operation pretty well, although his frustration of being still in hospital (into 4th month!) is starting to show!  He is still on oxygen and still has a chest drain in. He is on 24 hour meds (octreotide again) to slow down the production of the chyle (chest fluid).  Yes, sadly it seems there is still a bit of a leak... although it's not totally certain if more fluid is created/leaks because of the presence of the chest drain.... chicken'n'egg thing going on again in case you hadn't spotted it.

Sam has been grumpy and fed up more than usual.  The surgical site has been very painful, but pain relief has it under control. He has also had a night of sore tummy/vomiting due to introduction of the monogen GJ feed again.

Tonight when the girls and I called Sam to say goodnight, he was very excited about the thought of multiple visits tomorrow - a morning visit of a friend of mine (with coffee!!), then his 4 cousins and Aunty Janice coming in to visit him in the afternoon.  It was nice to hear him squealing down the phone and so happy.  The days are long and very dull - only so many weeks of repeat episodes of Mickey Mouse Clubhouse can keep you amused!

'Candace is much more amazing than Jasmine'.  I leave the computer for 2 seconds and the above happened - Just thought I may as well leave it in and I'm sure you can figure out the author!

The teams are busy figuring out how to get calories in to him, balanced with 'not too many calories' to help the chest heal and slow down production of chylos..... one surgeon mentioned it should just be a 'few days'.  This reminded me of the time they said that 6 weeks ago and I think I sighed audibly.   We are thinking we will be in for another slow long while....... sigh....... but we are conscious all are working hard and we have to be patient. This week I have been reading about a very patient guy called Joseph in the bible - yes the one with the multi-coloured coat.  He got a bad wrap - treated really badly, betrayed by family, then jailed for something he didn't do.  It took around 23 years for the truth to come out!  As I read it, I was amazed that Joseph kept a great attitude the whole time. God watched over him and even the horrible things that happened, happened for a reason, because God saw the big picture and years later, because of what had happened and because Joseph had proven he was trustworthy, had proven his integrity and shown his great attitude, Joseph was able to help lead a whole country through a major crises. So my 'take home' is:  'Patience is not just passing time, but that it is waiting with a good attitude', knowing that God has Sam and my families 'big picture'.  Harder said than done, but then it's not up to me to manufacture a good attitude but to ask God to help me - I'm human and frankly when I'm tired and fed up, I don't naturally err on the side of patience!  I run out of determination, willing, kindness etc... but God doesn't run out of what we need and he knows even before we ask.... and I am asking cos I need him.  Just can't do it on my own.

Heading to bed tired, but looking forward to tomorrow hanging with my boy, catching up with friends and family in room 6, Ward 24b (THE party zone tomorrow!)  If you would like to ever be a part of Sams party zone... you are most welcome.... just text/FB message/email to make sure all is good for visitors and to give time for Sam to get armed with his fart gun!

Monday, September 12, 2016

Sam the Courageous and Resilient One!



  1. the ability to do something that frightens one; bravery:
    "she called on all her courage to face the ordeal"



  1. the capacity to recover quickly from difficulties; toughness:
    "the often remarkable resilience of so many British institutions"
  2. the ability of a substance or object to spring back into shape; elasticity:
    "nylon is excellent in wearability, abrasion resistance and resilience"
    synonyms: flexibility · pliability · suppleness · plasticity · elasticity · 

I can think of no better words to describe Sam today, than courageous and resilient.  He went into theatre around 10:15 am and I met him in post-op around 3:30 this afternoon.  The surgeon explained that he found potentially a congenital malformation of Sams lymphatic system - and he is quietly confident that he managed to rectify it/stem the leak.  Time will tell as his body is challenged with feeds.

We are so very grateful, humbled and amazed at the genius, skill and years of training of the surgeon and other skilled medical team.  The potential for Sams life to be improved by having this procedure done is huge.  Words can not describe our hearts towards the dozens of personnel that have been involved in Sams care today.

I leave you with a photo of my courageous and resilient little man.  It was taken about an hour post op, when he was determined to sit up.... and he even tried to pose a smile!  

He has a chest drain in, which will be clamped tomorrow if there are no bubbles (lack of bubbles means there is no perforation in his left lung, which was collapsed for this procedure).  The need for extra oxygen will hopefully diminish as he gets stronger, but with morphine etc on board for pain relief, it will mean his lungs are too relaxed..... so we are happy for oxygen if it means he gets a break!

Sam was moved down to the surgical ward for post care, but once he is stable again he will move back to 26b (maybe a couple of days).  Francis is staying over with him tonnight, but I will be in to be with him tomorrow.

Thanks for all your texts, calls and offers of help - so thankful for you all!