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