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.

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.


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

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

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.