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!


Monday, September 5, 2016

Ground Hog Day

What a day!  I got to Starship at 7.45am, as Sam was on the morning theatre list.  Two minutes in the door and I hear he has been bumped to the afternoon list.  No problem, Sam and I will hang out, give him his bath and play.  About 9 the surgeon pops in and I complete the paper work/consents with him and he informs me that Sam needs 100 mls of cream into his J tube.  Now as Sam is so medical I am assuming 'cream' is some code word for a secret formula.  Well it turns out just normal cream you would pop on to your scones with a cuppa!  This was to be given at 11am over 30 mins.  10 am arrives and with it a ward nurse to say theatre have called and they have had two cancellations, so can we be ready for late morning..... sure, no problem... but now we aren't sure when to give Sam the cream... a phone call later it is confirmed that 'now' is good for the cream to go in.

11 am, post cream feed, a chlyohexidine bath and Sam and I are in the ward play room. Enter from stage left two anesthetist.  They casually ask how Sam is doing and I casually reply, ' pretty good - his chest is sounding much better and he has more energy'.  Her face fell and she asks about his chest, and it seems clear at this point this is the first she may have heard of it.  I confirm he was xrayed on Friday and has been on antibiotics...... anesthetist 1 scurries from the room to check the xray on the ward computer and then dashes from the ward.  anesthetist 2 listens to Sams chest and is happy it sounds ok for Sam.  20 mins later anesthetist 1 returns to say she has talked to two colleagues and the surgeon and is not happy to go ahead with the procedure.  She explained the procedure involves collapsing the left lung, so they can check out the cavity/area around it.  With his lung already compromised she was worried the lung may stick and not re-inflate... and that could be the start of a very serious situation and a long ICU admission etc...  

At this point I was very glad the surgery had been cancelled!  It gives Sam another week to fatten up (he hit 22 kgs today!) and get stronger, for what will be a complicated and long surgery.  The teams were a bit frustrated today, as they have all been working so hard, yet with 1 piece of the puzzle missing the outcome could have been very different. Communication is always the ongoing challenge when living with people right?  But I am so very thankful for the result today, and Sam has a week of hanging out, some time out each day maybe to play in another part of the hospital or at home with his sister - we aren't wanting to risk anything and catching a cold from being around too many people.  If this operation can happen and the leak be found, the potential for his nutrition and health is huge... so we are playing cautious at this stage.

Next Monday 12 September, Sam will head back to theatre.... to try again!

This afternoon the Consult Liaison Dr swung by - now that Sam is older he is becoming aware that his medical stuff isn't the norm, so we are having some behavioural issues.  He is also very frustrated at such a long admission and missing his friends and family, so having this team involved is good for Sams mental health.  They raced cars and talked about home and his sisters and it was a good start, which I hope will enable him to help process some of his challenges and sadnesses.

Sam would love to have visitors, either at home (probably be home most afternoons from 12 - 4) or in hospital - please just text first to makes sure it works and we don't mess you around.  Please also make sure you are all well - we love sharing, but only chocolate and red wine.... altho' Sam is still sharing fart stories - sigh!

Saturday, September 3, 2016

All change - again!

Since I last wrote, Sams condition and treatment options have changed several times! Within a 30 minute period the teams had 2 different ideas... and then these were both vetoed and Sam avoided surgery.  I am saying this to show how complex Sam is and how many people (incredibly talented and clever/kind medical & surgical personnel) are involved in his care - they all have a multitude of experience to draw on and collectively they come up with various plans.

Long story short, It was decided that the teams didn't want Sam to have two G.A.s in a 72 hour period - his lungs take a lot to recover from each G.A and the surgery on Monday really is the priority.  If Sams PICC line (in his right arm) failed/showed signs of infection over the weekend, they would pull it out and be able to keep Sam nutritionally stable by GJ feeds/fluids -so far so good!

On Friday Sam only had one temperature, and I had the job of keeping him as mobile as possible - to keep those lungs working!  With a suspected lung infection brewing, the physios were up encouraging him to do more exercise.  On Friday afternoon I took Sam down to level 3, where he worked in the gym doing some fun games/exercises, with his incentive being a ride in the car!  So with each game Sam would eye up the car and say, 'Are we done yet?'.  Finally we were and Sam donned his helmet and off we went.  With his right arm having a PICC in it, as well as a leur and splint in his hand, he was a 'one hand on the steering wheel cruising look' - very fun to take him out and about around the floor.  Sam is motivated easily by any rewards involving cars!

Today he had a great day!  Another 'long story short', but my car broke down at the airport last night (going to pick up Candace) and the AA guy couldn't fix it, so I left it there for the night.  Today Francis and Sam (complete with his AA kit) and a friend, went to try again to kick some life into the old girl.  A couple of hours later and another break down at some lights, Sam got home absolutely amped!  The silver lining to the hassle of a broken car, was that Sam loved it!  I sent Sam some photos of 'Rhonda the Honda' last night being attended by the AA and when I spoke to Sam this morning he said, 'Why didn't you call me Mum, I have jumper leads'.  He said it in such a 'dhuh' kind of 'you missed the obvious Mum' voice - very cute!  Today when I asked him if he helped fix 'Rhonda' and he looked at me like my teenagers do and said with another 'dhuh' voice, 'Mum ... you know my jumper leads aren't real!'

Tomorrow the plan is that Sam can escape hospital for a few hours and he may head to church with Francis to celebrate Fathers Day -  church is having a morning of all things 'blokie' - cars, racing, bbq...  I will head back in to stay with Sam on Sunday night as he is on the surgical list first thing on Monday.

Monday will be a big day for Sam.  Sam is constantly chatting about how 'scared' he is to go to surgery.  He really gets anxious in the pre-op room and is so aware that he is about to be put to sleep. Again, everyone works hard at keeping him calm and are 'kid friendly', but Sam is aware of what's going on and can see through it - he is too clever!  So we have been talking about this and I know that Monday will be another challenge for him. 

Please pray for the surgical team on Monday - I get the impression it isn't a straight forward surgery - they are trying to find the 'leak' to stop fluid from his lymphatic system spilling into his chest cavity. They think they have seen on images a possible area, but it is always different and challenging when dealing with reality.  They will also take out his current PICC and put another one in. Sam is first on the list, so maybe around 8 or 9 ish.

The girls are asking when Sam will get home - it's always a good question, but I'm afraid giving them a date is just not honest.  We really have no clue.... I am guessing he will be in at least until the end of this week, if all goes well on Monday.... but the only true answer is 'how long is a piece of string?'.

It was lovely to see the three of them giggling and hanging out this afternoon - Sam was showing us the 'birdie dance' and wiggling his bottom and falling about laughing. Having not had a boy before, we have stumbled upon the 'farty bottom' stage - the girls didn't go through this, but many a parent has told me this is quite normal amongst 7 - 9 year old boys (some have said it lasts til adulthood!). Sam finds it hilarious to mention 'fart' or 'bottom' in any context/conversation and then fall about laughing - the girls stare at him and roll their eyes, but it seems nothing deters him from this route of humour... so we are just going with it and wondering how long this phase will last... although there is always the potential that the next phase is worse (I don't have the courage to google it!).

Sam is happy, but as we saw last week, the difference of a few hours in his life is quite staggering.  I will update on Monday evening once we have more info post op. 

Enjoy being with your loved ones over the weekend.

X Shirley

Friday, September 2, 2016

Facing the Mountain

Candace did a speech at school last month titled, 'Facing your Mountain'.  It was very inspired and talked about having courage to face and climb your mountain, as the view at the top would be worth the hard yards.

Sam seems to have a whole mountain range to climb.  On Wednesday evening I packed an overnight bag and headed to a friends place for 2 nights of RnR.  Thursday morning Starship called at 8.45 am to say Sam had a really high temperature, a sore arm (possible PICC infection) and his GJ (Feeding tube) was blocked and could I come in - I did have a lovely 12 hours at my friends house!

Of course the only thing a Mum wants to do at this point is to get in, so when I arrived at Starship I was in time to help Sam face his mountain.  I walked in to the room full of nurses/Drs about to put a line in his hand.  He hand numbing cream on both hands and feet, ready to find a good vein.  Sam had a temperature, which meant he was less co-operative - actually he was fighting!  So 10 minutes of me and 2 others restraining him and him shouting at everyone, 'Go away, I wish you were dead!' Thankfully the Dr got the line in first pop.

Shortly after we headed to Xray, again this didn't go well.  They wanted to take abdo and chest xrays which required him lying on his side on a small table - he was hysterical and it was a long 10 minutes restraining him to get the right images.

He was traumatised but he calmed down once back in his room.  Him and I managed an afternoon nap.  Then the magic of Coca Cola was used to unblock his GJ tube - true story. Coke is a powerful dissolvent when every other thing has failed!

The Xrays showed he may have a possible chest infection, so he was started on IV antibiotics.  He is on the surgical acute list today.  They are hoping to pull out his PICC line and put in a double lumen line in his neck.  He needs good access for surgery on Monday and also for IVN.

I am finding it tough seeing him struggle so much with each procedure - when he was little this was easier.  Now we have to negotiate everything and still he may not comply.  

It is upsetting as a mother seeing your baby struggle and being able to do nothing about it. This is his mountain, yet I need to be there to support him in his marathon hike.... and that is tough.  I think the speed at which his health can change and dip is also traumatic - for him and us.

So today is another big day in Sams life.  We talked yesterday of courage and he talked of being scared... we talked and prayed and cuddled.  I pray for his physical health, but I pray more for peace for his heart and mind as he faces his mountain.  He faces it with people around him that love him, but I believe even his little heart can know the peace and presence of God, who loves him and cares for him.