Saturday, December 24, 2016

Christmas Eve 2016

Sam had a rough 48 hours after admission. He was in so much pain with his stomach hard and blown up like a balloon. He literally did not sleep for 24 hours and it was a tough time trying to consol him. A dye contrast dye study was done on his gut,  to see if there was a blockage or adhesion. Sadly this didnt show much, but it acted as a laxative and 15 mins after it being put in his Jejunum his vowel
Woke up! Over 8 hours he deflstes and his stoma losses were triple what they would be in a 24 hour period.  A sample of the stool was sent to the lab and it came
back having grown a bug - so it seems he had a bacterial infection and antibiotics have been stsrted. Yesterday he mostly dozed on and off and his feeds were slowly started again. He had a really settled night and is now back on to the higher rate of nutrition. It was decided to give him a feed that is easier for his gut to digest, than what he was on prior to admission. So it is a backwards step for sure, but slow and steady for now.

Yesterday his sisters came in and hung out in hospital - with the high possibility Sam will be in for Christmas, Candace set about to create some Christmas joy in Sams room - check out the very cool tree - no chance of needles dropping off this - sh has done so well to create this out of hospital issue incontinence sheets etc!

Tuesday, December 20, 2016

A pre-Christmas hospital dash

Today started so well and was all planned out.  We had 4 lots of friends that we were goinf to see - 'or ing coffee and catch up with one family, followed by lunch with Sams carer and family, then headingover to the city to see other friends. All seemed well until I gave Sam his first bolus of the day. His tummy seemed rounder than normal
And he was sore.  His ilieostomy bag hardly had any outputs in it. I kept an eye on him and noticed he was restless. After lunch I decided as he hadnt improved we would pop into Starship on the way to seeing our friends.

How dumb am I?! - one doesnt just "pop into hospital'. Aftter 7. Hours we are still in the emergency dept, but he has been Admitted with either a bowel Obstruxtion or severre constipation - 2which is weird as he is on a liquid diet.

In himself he is very happy and has no other issues. His lovely sisters sat in their various favourite hospital spots for about 4 hours and read and ate, but they have now been rescued by a dear friend who will house and feed them for the  night..

As the girls left they gave Sam kisses and instructions- 'Get outw before Chrsitmas!'.
This blog has been written in a poorly lit room at 11 pm, on a phone on dim (as battery about to die). I havemt got my reading glasses with me, so it hasnt been checked that well and my thumbs are way too fat foe the keys on this iphone,  so grace required when reading/translating this!

Surgical are taking Sam in and I am hoping and praying their skills wont be required to resolve this.
 X

Thursday, December 15, 2016

School is OUT!

Sam marched in the door this afternoon and said, ' Mum, next year when you go to school you can't find me in room 6, don't go there.... you will have to go to room 10 to find me because I will be in year 3!'.  It was so cute - he has just had the best time in his class - truly the teachers have cared for him, the children have embraced him, the school community have cared for him and school has been a safe and happy place... and occasionally he has learnt something!  We have a report, but it says nothing that we didn't already know - so proud of our boy for getting through a really tough year and still smiling.

Monday saw Sam at gastro clinic at Starship.  Over the past 6 weeks we have been playing around with Sams feeds, with great success.  We have had a 6 stage plan, titrating one lactose based milk up and phasing the non lactose/pre digested solution out.  Sams gut has coped so well that now we are on total Nutrini feeds - this is revolutionary for us, as the milk comes made up so we don't need to be measuring and mixing with powders, washing out bottles and caps.  So it is a whole lot easier to administer and to maintain.  In the new year we aim to start a new feeding regime, where we add in a higher calorie type of Nutrini, which will mean we can drop the amount of hours Sam will need to be hooked up - potentially getting him from the current 16 hours down to 10 - that would be A mazing!!

We aim to have lots of time at the beach over the summer. Sam is now asking to head to the beach - YES, never thought that would happen.  His world has opened up so much since he has been in water, so we will be encouraging his new found love of all things wet.  Truth be told, he likes the concept of water, but the reality of splashes on his face and sand and seaweed on his feet means he still has a long way to go to be a chilled out beach bunny - but with his two big sisters very much able to take that title, he will have two role models to follow.

I leave you with a variety of photos from the past week - a Christmas Party put on by the charity Kids Foundation, was a great day out.  Sam was very brave and went and met the Big Red Guy on his own, without a fuss to get his gift.  School has also had various fun days and of course swimming.








With 10 days until Christmas we have the usual traditions yet to completed - making of Gingerbread House is tomorrow, visiting various places/lights etc still to come.

I will endeavour to update the blog one final time for 2016, before Christmas.  I hope your lead up to Christmas has plenty of time to stop and breath, to enjoy the wonder of life and be thankful as you look back at the year that is fast drawing to an end.

X

Monday, December 5, 2016

20 more sleeps!

Yes Sam is very excited about Christmas coming and is on the countdown.  Tomorrow is his prize giving and concert - unless they are now handing out prizes for the lowest school attendance, I am thinking Sam will just be taking part in the Kapahaka item and his class item.  Which will definitely be cute, which is a given when you have 60 six and seven year olds on stage.  It will be a celebration for sure - he has done so well with a tough year on many fronts.

The last 2 weeks have been very interesting and I should have blogged at the time, but was trying frantically to keep the girls happy by making sure all the usual festive family traditions were adhered to - oh the pressure!  But traditions are very important to keep family stable and secure and it has been fun doing our usual things. Below is our advent calendar - every year I surprise them with what it will be like.... this year it was a pallet I found off the side of the road and a quick look on Pinterest to steal the ideas for the rest.  The kids love taking their turn to open the envelope and read what the task/bible reading/poem/treat is - Sam can't read all that is written, but he tries!


10 days ago Sam went to bed seemingly ok - albeit still with a chesty cough and on antibiotics for that.  He woke up with quite a different surprising scenario - he likes to keep me on my toes!  Part of his 'manliness' was swollen to the size of a large golfball.  It wasn't causing him any pain and he was keen to go to school, so I did what I usually do when odd things happen, I took a photo and sent it to my fabulous Nurse Specialist at Starship.  I am sure her computer has a different set of virus checkers, as the photos I send would never get through otherwise!.  Sam was happy that his 'tentacle' was ok and we had a chat on the way to school about how we don't talk about things on our body covered by clothes... but he could talk about his toes and fingers etc.   Well about 10:30 I get a call from the Nurse Specialist (who no doubt was delighted by her inbox offering) and told I needed to get him in to hospital ASAP and a surgeon would take a look and he could potentially need surgery that afternoon.  So, feeling like a failure of a mother for sending my son to school with something potentially quite sinister, I complied and got him in to hospital.  After an ultrasound and various inspections, it was agreed he didn't have anything major going on, but that he has a Hydrocoele - basically fluid from his bowel is leaking into his 'tentacle'.  We sat and sat and waited and after many times pleading my case to escape, we were allowed home after 6 hours and a non-urgent surgical slot would be allocated and we would be notified in due course.  He has been home and happy and it hasn't happened again thankfully.

Now that Sam has a port in his chest, he can go swimming, as risk of infection in his central line is virtually nil, as it is all under his skin.  The girls are slightly grossed out by his surgical implant, as it looks like the start of one of the scary looking people in the Ripley Believe it or Not books, who have had horns surgically put it and covered in tats - I have assured the girls this isn't the start of a slippery slope and he will only be having medical implants and not implants for vanity sake!

So I leave you with a photo of his first day getting in the pool!


Thankfully Ange and the teachers ignored his protests and the other students encouraged him to get in.  The sensation of water and splashing is very foreign to Sam, so I am going to start showering him, so he can get used to it.  He came home with 'Brian the Kiwi' for the night as reward for his bravery!

Now that summer is well and truly here, we will be heading to the beach at every opportunity so he can be in the waves - I am wondering if it is too big a dream to have him surfing by the end of summer??

Yesterday he helped clean his Dads car - when he gets home this afternoon we are going to wash Ange's car and then mine.... all good water play options (& just learning to be useful!) and we both need our cars washed!


I will endeavour to post pics of his prize giving concert tomorrow.  I hope you are all enjoying the joy of the season.
X Shirl

Monday, November 21, 2016

Bugs gone, new ones come... sigh!

So Sam has had a good week with him getting home on Thursday night with his new port in his chest.  Friday he braved school, but I picked him up early as the nurse was coming to administer his drugs at home at 2.30.  He so loves school, but I am conscious he slots back in having had such big gaps out of his learning and the social side of it. He has mentioned some 'friends' but also some kids that 'laughed at me'.  I think the nature of his fractured world is going to become a larger player in his development, physically, mentally and emotionally. It was sweet to hear the calls from around the play ground and class rooms as I walked him in to his class, after a 4 day absence - students of all ages calling out, 'Hey Sam', 'Hi Sam welcome back' etc - very heart warming.  His school and staff are truly amazing - so understanding of him and his unique needs, both medically and educationally. I don't believe for a second anyone is being mean to him, but I think Sam is starting to realise his differences and this year has been hard for him with so many long breaks away. He mentioned last week that he wanted to go the toilet with the other boys, and not go to his own bathroom.  He so wants to fit in that he is becoming aware that he can't even go and pee with the boys - lots of challenging conversations to come!

Sam had his last nurse visit today, so he had his last IV antibiotic for the urinary tract infection and it all seems clear.  Sadly yesterday he seemed to start a rattly cough, totally out of nowhere.  Last night was tough for him, waking to cough every hour or so.  Today he had a booked appointment with his main Paediatrician, so after a thorough going over on general things, his chest was listened to and he came back with more antibiotics.  We have increased his chest physio to 3 times today and he hasn't had any temperatures or runny noses.  Our instructions are to run the oral antibiotics but if Sams fruity cough hasn't improved within 48 hours, to venture back in to Starship.  Oh how I love that we have Starship and all the skills available, yet don't love the frequency with which we call it home.  I am hoping and praying that we can keep him home.

I have just finished reading a rather alarming article in the NZ Herald titled:

The Big Read: Is the world on the brink of an antibiotic apocalypse? 

It didn't make for happy thoughts, as Sam lurches from one antibiotic to another, all the while becoming resistant to various ones. So I leave my concerns with God and just go about caring for him as best as I can. Quality of life is what matters today... for us all right? I am reading a book on Prayer at the moment - a challenging read as it raises many questions and doesn't have neat little answers. But I have found it comforting as I pray and leave my daily burdens with God, not that answers I want come about or even that things necessarily change, but it puts me back in the right order of things... I am just a frail being on earth for a short time, reliant on God to give me breath each day and the strength to get through it. I am so thankful for the joy that comes with the knowledge of Gods love encompassing and watching me and that it isn't dependent on me being good or clever enough or on external events... so as I wash up bottles and change milk feeds and give meds tonight, I do it with the confidence that our life and times are in His hands.

I've just re-read above and realise it can sound so trite and self-righteous.... I don't mean to.  I guess when life falls apart around you, which it does with surprising speed and frequency in our home, all the fluff and bubbles disappears and the real stuff remains.... and for me and my experience, it's been God and the words in the bible that have rung true, tangible, unwavering and peace giving amidst mess and exhaustion.  It doesn't mean anything has changed or improved in the daily events, but calm and courage that can't be humanly created or explained constantly amaze me.... so I am so very thankful as we head into this Christmas season for Jesus - celebrating God coming to show himself to us in our every day messy lives.

At the paediatricians today, Sam and Dr shared jokes with each other.  Sams was stolen from Zootopia, but then Sam ends it with a slow sloth smile: 
Q: What do you call a 3 humped camel?
A: Pregnant 

Drs joke: (This joke was shared for 2 reasons - Sam loves his bee and we had been talking about toileting/peeing with Sam!)
Q:  Where do Bees go to the toilet? 
A:  The BP Station of course (For those non kiwis, BP is a petrol station chain in NZ... not sure if it world wide.... yeah, jokes are never funny when they have to be explained!).

Nite nite
X

Tuesday, November 15, 2016

Post Surgery Update

Sam went into theatre about 12:30 and I went down about 2:45 to collect him from post op. He was fine for about 5 mins then he turned into a raving violent biting angry screaming individual. I know its the drugs and normally I am fine, but after a kick to the throat (which hurt), then a really strong bite on my cheek, I found it all too much and sobbed may way along side him as we walked on to the ward. He continued for around an hour and had to be restrained by 2 people. Each time a lull came we would loosen our grasp on his arms, but he would then try to rip out his various medical devices. I  left the room several times and the capable nurses coped so well with him - seriously they do not get paid enough for all they deal with on a daily basis.

Eventually Sam relaxed into a sobbing mess as I cuddled him and reassured him I loved him so much and all would be well - poor wee man, so much to deal with.

The surgery went fine and he has a portacath in his right chest.

He is sitting up playing with trains and watching tv totally oblivious to what went on. I am lying beside him wishing my cup of tea was something stronger!

I think the plan is to maybe get home tomorrow, with him having IV gentamycin to try to kill off this uti.  I need training in how to access and use the port, as this is a new device for him.

As he was in theatre I read the following, which gave me peace and encouragement: Psalm 68:19, 'Praise be to the Lord, to our Saviour, who daily bears our burdens.' I am so glad He can cope with my burdens ... And He can cope with tomorrows too ... Now that is more comforting than the cup of tea I just had!

Sleep well
Shirley

Sunday, November 13, 2016

Bee Mine!

Today after church Candace, Sam and I (Jaz hit the books as she faces exam week ahead) had lunch with some of our favourite fun people - we distressed our children as we (AKA 'the olds') sung and danced to 80's hits.... then the bee suit was donned for a visit to their bee hives.  Sam didn't quite get the whole kit on, but he was so delighted to wear some of it and then he tested it with his bee and it worked - no stings were felt - eureka, it works!



Sam was tired after a rough night - waking with groin pain and vomiting - Francis was sleeping with him to give me a chance to catch up on sleep, as we are also facing a hospital week ahead (which means not much sleep).

So Sam still has a uti, which has been treated for the past 2.5 weeks at home with 3 different drugs, but it's not clearing.  On Friday I spoke to Starship and after many phone calls and juggling logistics in hospital, Sam needs to be at Starship by 8am tomorrow morning.  The plan is that on Monday he will have some chest ultrasounds, to check out how good his veins are, as he is on the surgical list for Tuesday to get a portacath in.  This is a central venous catheter, but unlike the other IV access lines he has had (CVL or PICC), a portacath is buried under the skin - see below.  Clearly Sam will have to wait a few years for the chest hair and beard... but you get the idea!  The positives with this is that it is covered so the skin can get wet/shower/swim.  The bubble thing is then accessed and he could have IV antibiotics through this.  


Image result for portacath

On Friday we had about 4 plans for different scenarios.  Thankfully 2 of them didn't eventuate through the weekend, so we are down to the last 2 scenarios - hopefully Sam will be reviewed/ultrasound to find line access and we can come home for the night, returning on Tuesday for theatre.  The other option is that they decide Sam needs to be admitted immediately so they can keep an eye on him/treat uti in hospital and surgery on Tuesday.

He hasn't had a portacath before, so I have no idea about post surgery discharge or even how to use it, so I am guessing we will be in hospital for most of the week for healing and training.

I will take my laptop in and update on Sam when he is in theatre..... He is a brave boy, but I wish his body coped with just oral antibiotics. Sadly his little body has been exposed so long he is resistant to many simple ones and is onto the top shelf drugs.

Have a good week.
S

Thursday, November 10, 2016

UTI - Go Away!!!

We have had too much fun recently with a number of people staying with us. This past weekend we had very special friends from the UK fly in.  Sam managed to understand their gorgeous Scottish accents and it was lovely to see him instantly fall in love with John and Kathy, who have been a very special part of our lives for over 20 years.  They have literally travelled the world to see us, having holidayed with us when we lived in Thailand - the girls were 3 & 5 when they last saw them 10 years ago.  So Sam had never met them in person, but he had talked and skyped with them many times, so it felt like he was meeting old friends.





Sam was very sad on Tuesday when he woke and they weren't here, but they will be back after discovering the beauty of the South Island.  Once Sam gets an idea in his head.. it sticks, really solidly!  So we have a daily countdown for their return!

2 weeks ago Sam went to bed very happy, then woke up about 2 hours later bent over in pain and screaming in pain, with his urine looking like custard. Poor wee boy, the infections come on quick and violently.  He had a grizzly weekend, but once the meds kicked it it seemed to clear.  3 days later Starship decided to change the meds as Sams urine sample showed it could respond to a different drug.  2 days into the new drug and Sam is miserable again - hourly waking in pain through the night etc.  So a quick switch back to the other drug and 2 days later (still showing no signs of improvement) we increase the dose from 1.5 mls - 3.5 mls four times a day.  Sam has been at school this week, but last week he missed 3 days: 2 days due to hospital appointments and 1 day due to uti/pain/miserable. 

So I am a little anxious as I keep an eye on his urine - it is still cloudy - not getting worse, but not clearing ..... I think if it is still cloudy in 48 hours it will be back in to Starship.  If this drug doesn't work, he will need an IV medicine, but he doesn't have IV access anymore.  So the teams will have to toss up whether he gets another PICC or a port (under chest skin IV thing), or just a simple line in a vein.  Oh I am really hoping and praying that his little body gets strong enough to fight this bug and he can stay home and be well and happy.  I will keep you posted!

X

Thursday, October 27, 2016

Momentus Day!

Sams PICC has not been used for around 4 weeks, but each week I have to pull back the heparin and discard it, flush the line with saline and lock it with strong heparin again.  This is done to keep the line patent.  It started to play up weeks ago and was hit'n'miss if it would draw back.  Well this past week it wouldn't push either.... so it was totally useless.

PICCs are normally a temporary line, but Sam has had it in for nearly 7 months! The risk of infection of a defunct line is quite high, so it needed to come out.

One of the reasons for keeping the PICC was in case he needed IV antibiotics for urinary tract infections.  The last 2 infections (which were 8 weeks apart) have both responded to oral antibiotics.  This is great news and the urologist said that with the bladder having been reduced so significantly, and to have all the pockets/flaps of floppy skin gone, the bacteria should be easier to deal to - and he seems to have been correct!

So I leave you with before and after shots of Sam with two arms - NO line in is arm.  NO lines in his chest, NO lines in his legs..... NO IV line at all!  My cynical side, that has celebrated other medical victories and then Sam has quickly gone down hill, would say don't get too excited.... well you know what, I just blimmen am!  I am going to celebrate and thank God for his goodness in Sams life..... in our lives.... to see the nurse slip this 20 cm 'worm' out of his vein was quite an amazing moment.  To see this little line that has both given him access to medicine and nutrition, and also been a reminder of his condition has gone!  It was so nice tonight to massage cream into his arm to soften the flaky skin which has always had a sterile dressing on it.  

With no line, Sam looks forward to a summer where he can splash in waves, jump in rock pools and not be worried about line infections..... 

Tonight I am so thankful the PICC, and all it represents has gone.... I am so grateful that his little body responded so well to oral antibiotics and I am so thankful that the frequency of his last uti's has dramatically reduced.  So so delighted and I am praying that uti's will continue to diminish....and that we can get enough calories into his body .... so nice to have such a change to a long hard 16 weeks in hospital.

Here is my little rock star getting ready for the home care nurse to do the deed!


'ARM SOCK' - BEFORE FINAL REMOVAL
PICC - SOON TO BE REMOVED
 COMING OUT....
GONE!!



YEAH - CHECK OUT THOSE MUSCLES!!

Monday, October 24, 2016

Too much fun with Family!

It has been a long weekend in NZ, so Sam and the girls had today off school.  This was made especially sweet as Aunty Jude and cousin Jonathan landed on Thursday evening and were hanging with us until this afternoon.

Sam had never met Jono until Thursday evening.  On Thursday morning Sam was asking about the upcoming guests arrival and asked what Jono was like. I said he had a really deep voice and was really tall..  Sam looked a tad puzzled and then said, 'But will he fit in our house?'.   Phewf... all are relieved he fitted in - although he was given a mere single bed on the first night. Like Sleeping Beauty it didn't bode well for a good night sleep as his feet scrunched up against the end of the bed, so it was remedied for night 2+ as he slept on the floor on a mattress.

Sam is a complex little guy.  His medical issues are fast becoming the minor of his issues as his developmental issues are becoming more pronounced and harder to deal with.  On the first afternoon we went on a walk to the local park and down to the beach.  Sam is nervous and anxious around any animal, as they are unpredictable in their speed and direction of movement.  They also can make sudden loud noises, which freaks him out.  Well, it is no exaggeration to say that 95% of the dozenes of people we encountered were in possession of 1, 2 or even 3 dogs. His obvious concern and anxiousness was very evident.  This fear of sudden loud noises and movement is quite debilitating, yet understandable as he has mobility issues and often is easily knocked over.  Well, it was hard work, but made so much better by the helping hand of Jono and Jaz.


We ventured far and wide as tourists in Auckland - Takapuna, Devonport, One Tree Hill, Cornwall Park, Mission Bay and the Chinese night markets (and that was just day one!).

Some things are just easier with out little brother hanging out, especially one that needs to have 2-3 hourly bladder washouts and to be hooked up to feeds.  So today I left Sam with a friend (& nurse) and took the girls out so they could enjoy an adventure.  Tree Adventures did not disappoint - total adrenaline from the time you climbed the first ladder, to the final flying fox dismount - a great time with the girls and watching them laugh and smile with their crazy cousin!




The week ahead sees us in hospital on Thursday for a respiratory review.  I also will be in touch with Sams Nurse Specialist, as his PICC line is neither drawing back or pushing - so basically is useless and needs to come out...... it's easy enough to do, but need to check with them.  I don't want Sam to miss more school if I can just do it. We shall see.

I leave you with other photos of Sam having a great time being at home and just doing normal life!


A selfie pose with Jono,....


Hanging on a tricycle while the rest of us consume coffee and cake!

But not everyone came... so Sam catted to Uncle Pete on the phone.

A fabulous fun filled few days.... but back to reality and school again. Enjoy your new week. X


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.  

x

Monday, September 26, 2016

NOOOO!!!!!

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

HOME!!!

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!

cour|age
[ˈkʌrɪdʒ]

NOUN

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

re|sili|ence
[rɪˈzɪlɪəns]

NOUN

  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!

X

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