Tuesday, June 7, 2016

See you in 6 months!

Hi everyone, as promised, some photos, which really don't capture any of the fun that we had as my photography skills aren't very fabulous!  But the first photo shows that Sam got hold of my camera and was upskilling his 'selfie' shots.

Birthday Dressing Gown all the way from the UK!

Fireman Sam Birthday cake

Watching Minions with Big Teen Candace

And Netball has started again!!

I AM bigger than my 4 year old cousin!

And the final shot of Sam in the car today with his new birthday toolkit for fixing the car!

Now I am going to hibernate for the winter and I will thaw again ready for a blog at Christmas - see you in six months!

X Shirl

Sunday, June 5, 2016

7 years old tomorrow!

So a little boy has gone to bed 6 years old and will awake tomorrow as 7!  He is very very excited about his impending birthday and has given us all sorts of unsubtle hints at what he expects - 'I want a Fireman Sam birthday cake', 'I want a Thomas train set' etc et al.... unfortunately his health isn't the best at the moment, so we are in zombie land from weeks of broken sleep and the birthday arrangements are rather lose..... He has a nurse coming at 12 noon to do an antibiotic infusion (uti!), then 2-4 is his party.  Think low key, 'pass the parcel', musical statues and a walk to the local playground and a cake..... oh and he has requested that we lie the spare mattresses down the stairwell so they can slide down them!  He is really adamant the nurse is not to come tomorrow as that will ruin his birthday, but she has to come as he is on a 5 days course of hard core meds and tomorrow is day 4!  So we shall negotiate that hurdle tomorrow.

I come to this blog with many mixed thoughts.

I am so so grateful that Sam is turning 7!  Seriously.... 7 years ago?!!  It is truly amazing and I feel quite emotional on his birthday eve.  I know I should be really happy, but my underlying emotion is one of sadness as I see his daily struggle.  It is probably more pronounced as he hasn't had great health the last 3 weeks, which means he has missed between 1 - 3 days of school each week due to pain.  Missing school means that he doesn't form the friendships that normal school kids do, as his education and social times are interrupted.  He also doesn't have many male friends - 7 year old boys are rough and tumble and charging around, but Sam is sitting or quietly playing, often with girls 'mothering' him.  It's all very sweet and lovely, but he wants to run around with the boys but he said 'they might hurt my line'.  He is aware he is a bit delicate with his various tubes and protects himself.  He does like soccer and desperately wants to play but can't keep up.  So with my mothers heart on I feel sad for my little boy.  His differences are becoming more pronounced as he gets older and his health issues are still very much there.

I am so grateful he is off TPN and doesn't have a central line anymore.  However, he is down to 19kg and every day I have to weigh him and be aware of any hint of diarrohea or higher fluid outputs.  We need to make sure he is having 5 or 6 bolus feeds into his tummy during the day.  I find this a huge pressure (stop and imagine if you were on a medication that you had to make sure you fitted in 5 times each day - it's quite tricky), as the daily weighs show how delicate this balance is and we would ideally like him to be 3 - 4 kgs heavier.

Sam is truly a delight - he loves learning and is reading and spelling and doing maths with great gusto. He however does have some development quirks that are causing us some concern and we have a psychologist involved that is giving me tips on how to get him interested in food (so far not much progress) and looking at the 'quirks'.

Sam has two truly fabulous sisters - they adore him and it is mutual.  He is loved and enjoyed by them, but 7 years of interruptions to their lives means that they may have hit 'empathy overload', and I find it really upsetting when there are huge eruptions from them, which seem to come from out of the blue.  It upsets me because I know they care so much about him but they too are hurting - not physically like him, but when he is struggling it has a ripple effect on the family.

Last night we were out at a combined family birthday celebration - 4 cousins birthdays in less than 2 weeks.  Sam announced to an Aunty, 'I was such a good boy this morning, I slept in til 5!'.  He was so proud of himself and he was also telling the truth.   It was the first time in 2 weeks that we had a night of sleep that didn't see us up multiple times, but our day started at 5.  7 years of broken sleep is just plain horrible and as we get older it's very hard to navigate the day on that - I can see why sleep deprivation is a form of torture - it's truly horrible.  It is hard to maintain friendships and be involved in normal community life when I really don't have the energy to see anyone - I want to be a hermit that sleeps and has an identity rather than 'Sams Mum'.

Someone asked me what we did when we had to get up to Sam in the night.  It can vary, but it usually includes something that has leaked - could be a faulty giving set which means the milk hasn't being going in, but leaking all over him or the floor; the poop bag could have filled much quicker than normal and the pressure has pulled it off which means him and the bed and the floor have liquid poo all over it/him and needs cleaning up.  It could be a urine drain has moved whilst he was sleeping and is causing him pain and it needs readjusting.  It could be bladder pain and he is begging for a bladder washout, which involves warming a bottle of saline and injecting it into his bladder and draining it out - this seems to bring him relief....

So tomorrow we will celebrate Sams life and I will push the sadnesses down, so as to not affect the celebrations.  I have decided that tomorrow night I will post some photos from his birthday and then I want to take a 6 month break from blogging. I know I don't do it as often as I used to, but I am finding it becoming an added pressure on an otherwise full life.

As the years roll on I could go back to a previous blog and cut and paste, as the content, frustrations, health limitations, sadnesses are the same...... and although some good stuff does happen, it is the monotony and exhaustion of the ongoing normal dealings of a chronic life that I find discouraging to write about.  Unlike Facebook, where everyone is posting shots of their holidays or children's accomplishments, or fun and crazy activity, this blog is one of regurgitated, 'had 3 trips to Starship this week, Sam has another uti/fungus and is on some hard core meds etc... it's not very nice to always be writing the same stuff that bottom line means Sam is struggling.

I find it a pressure to find the time to write, to make sure I have some good photos, to edit and weave something interesting/readable to what is just a monotony of ongoing 'Same, Same'.  I'd rather spend the time curled up reading a book with Sam or spending time with the girls.... or sleeping!  I'm not a natural words-smith, so each blog takes me a couple of hours to write and edit....

When we started the blog 7 years ago we surely didn't think I'd be sitting on my couch writing before his 7th birthday!  It was started largely to keep people aware so they could pray for us as we weren't expecting our boy to live.  This blog has helped me process thoughts and emotions during operations, solo parenting, long hospital stints, share in the total joys of all that Sam has achieved.  But on Birthday Eve, year 7... I want to thank you for your love and care for Sam on the wildest of roller coaster rides I've ever been on.

But now I need to go and  make and hang up Sams overnight bottle of milk and empty his poo bag, his 2 urinary bags and his 1 gastric bag before I head to bed where I hope it involves unbroken sleep....just like every other night.

Tomorrow will be a new day and photos of a very excited boy will be posted tomorrow night.

X Shirley

Monday, May 2, 2016

Term 2 School is On!

Last time I posted Sam was just about to leave hospital having had his Central Line removed from his chest and a PICC line inserted in his arm.  We were SO excited to bring him home without a Central Line - the implications are HUGE... but we also new it was a trial and we had to watch and wait and see.  Also we had been burned previously when great advances in his health had needed emergency surgery as it hadn't worked..... so we didn't want to really get excited, just in case.... our weary hearts weren't sure we could cope with the disappointment if it wasn't as good as everyone was saying it was....

So that is why I have waited to blog - I wanted to focus on Sam and making sure we could do everything possible to make the positive changes stick.  

Sam has been coping fine without intravenous feeds.  We have been hooking him up to his 2 feed pumps (into his Jejunum) for 12 hours every night as usual, BUT we have also been giving him manual bolus feeds directly into his stomach 5 times a day.  The team wanted us to get him up to 3 feeds of 100 mls, but we found he started gagging or vomiting once we hit 80 mls, so not wanting to ever go back to TPN, we have been giving him 5 x 80 ml boluses. Each Saturday I weigh him and let the team know how he is doing.  So far so good - 20.8 kg, 20.8 kg, 20.1 kg, 20.3 kg.  So although he had a little dip, he seems to be holding his own.  I am trying to give him more calories if possible so that we can add some meat to his bones.

Each Thursday I access his PICC line in his arm by drawing back the strong heparin, flushing it with saline and locking it off with fresh heparin again.  We need the line so I can do monthly bloods (tomorrow).  The team also wanted him to keep the line so we could give him IV antibiotics if necessary - BUT this is the next fabulous news.

We convinced the medical team that reusing urine bags (I get one per week and have to wash/sterilise it and use it 7 times each week) was potentially one of the biggest sources of infection - I have always doubted that reusing the bags, which have a 30 cm skinny neck that you can't actually clean (but could leave soaking in Miltons) would never actually have become sterile again.  To me it seemed nuts that we have to clean his urine access site, use a clean catheter and sterile wipes each time, then hook up a bag that probably was dirty. Anyway, our fabulous nurse specialist managed to make it happen that we are using clean bags every day on a 6 month trial.  It is being done as a proper clinical trial, so that if the outcomes are positive, the team would then use that information on other patients that regularly get urinary tract infections and also currently have to re-use bags.  Well Sam hasn't had a uti since we started using clean bags 6 weeks ago - this is the longest stint without a uti since March 2014!  The difference to him (& us!) is probably bigger than getting him off TPN.  I know each medical department have their own budget to protect, but surely the bigger picture of the cost of a daily bag (from our home care budget) is much less than the cost of ongoing hospital admissions, expensive antibiotics, not to mention the loss of schooling to Sam and how much his body has to cope with in regard to pain and antibiotic resistance.  So, potentially, as he hasn't been needing the PICC, it may be taken out in the next week - NO LINES!!!  Just a GJ, poop bag and 2 urine drains - woo hoo!!!

Sam has started back at school today in his winter uniform - long woolen socks and shoes. The smallest socks had the heel nearly at the back of the knee, so they have been washed in boiling water and dried in a hot dryer - still too big, but not laughable anymore.  They are folded over many times otherwise he would need suspender belts!

On May 21st Sam will again be a patient for the Australasian Medical Exams.  This is where Drs from around NZ/Aussie are examined... so naturally they need patients that they don't know, to be tested on.  This will be my third year doing this, and although it is a long day, Sam copes well as long as he has cars to play with, and it's nice to be able to give back to the profession that has done so much for him.

Also I have been asked to be on the newly created, 'Clinical Excellence Committee' at Starship and ADHB.  This committee is made up of 12 hospital managers, 1 Maori Rep and 1 Consumer Rep.... I am the Consumer Rep.  The meetings look to be monthly with pre-reading involved.  I'm not sure I will understand a lot of what will be discussed, but I do see it as a privilege to have been asked and I hope that my perspective can help advocate for families and keep patient care at the forefront of medicine.  It will be odd being at Starship without Sam present!!

Sam seems very happy, although he does try to get out of having his boluses, as it is a strange sensation for him.  We continue to work with him to try food, but he is very reticent to and very stubborn - but his strong will surely has got him this far!

I leave you with a picture of Sammy helping us set up the caravan at a weekend away!   Hopefully the next photos will be of him without a PICC line and the other of the TPN company taking away his pumps, pole and trolley!  

Best wishes

Tuesday, April 5, 2016


Yesterday we waited most of the day to head to theatre, but at about 3.30pm were told it wouldnt be happening - but we would be early on the list this morning.

I had been prepping Sam about how I needed him to be brave and that screaming and shouting upset all the kids on the ward that could hear him. He understood he needed to be brave.... So he made a deal with me and we walked down together hand in hand ... Him in his 'Shark' dressing gown ... And me in my clothes (sadly I dont have a mathing gown, but be assured if I did I would have worn it today with great joy if it would have helped Sam).

Hr came back with his left arm bright pink with iodine, as they had tried to find a vein, but gave up and found a usable vein in his right arm. So he currently has a pink arm and a white arm, as it is bandaged to secure the line.

He woke relaxed and happy and it was amazing! He has had a lovely afternoon and looks forward to escaping home for a few hours tomorrow. The plan is for discharge on Friday - roll on the weekend!


Sunday, April 3, 2016

Sunday Night Update

Phewf, what a few days it has been - we are emotionally and physically tired.

This past surgery was different to the rest.  Sam is so much more knowing and when I talked to him about going for surgery he went beserk.  When the orderly came to take him down he was screaming (literally the whole ward could hear him), 'I DON'T WANT TO GO FOR SURGERY, I'M NOT GOING'.  It is hard forcing your kid to do something that literally is needed to save his life - the sepsis was consuming his body and he needed the line out that it had latched on to.  But a little 6 year old boy doesn't understand that when he has a high temperature, feels miserable and is scared.

Post op he was slightly better than normal.  We left for theatre from room 21, but it was felt better we were nearer the nurses station for closer monitoring, so we returned to room 5.  Bizarrely the channels on the tv vary according to which room you are in, so we left with Disney Junior available, but then it wasn't!  He wrestled and screamed for about 20 minutes wanting to go back to his old room.... it is hard work forcing him to keep his nasal prongs in, which are unpleasant, but necessary...

So the hard happened and yet at the end of the weekend it is a very different picture.  The medical teams are thinking hard how to increase the calories in his enteral feeds and how to be creative to get fluids into him, that he may not even need another line in.  Currently he only gets 16% of his fluids and calories via his central line (well he did before it was pulled out).

Yesterday the plan was he was on the acute surgical list for Monday to get a new PICC line in.... but in the last 24 hours the teams are suggesting they meet on Monday to brain storm options to see if it may actually not be needed.

This is SO huge - the potential for his life without a CVL is incredible to think of.  He would be less at risk at awful sepsis like he has had twice in the last 3 weeks, he would be able to get wet/swim, we wouldn't be tied down to the clock (as much!) etc etc etc...  

At point of writing we genuinely have no clue what tomorrow holds for Sam - we are in the hands of the medical teams, but we are really optimistic for change.

2 nights ago I had a chat with Sam that rocked me.  I was tucking him in and he was pulling on his nasal prongs.  I told him to leave them and hopefully they would be able to come off the next day as he was getting stronger.  I cuddled him and told him I was so proud of him, so proud of how brave he had been even when he has to have things done to him that aren't very nice.  He paused and said, 'Was Dad brave when he was a little boy in hospital?', I explained that Daddy hadn't been in hospital when he was a little boy. 'Was Jasmine brave like me when she was a little girl in hospital?'... and for each person he asked me I explained that neither Jasmine or me or Candace had been in hospital having operations like him.  It was quite a weird/special/sad/intriguing moment as I could see the cogs ticking over in his head.  I was intrigued as it seems he thought that what was happening to him must have happened to all of us.  It seems he is beginning to see that his life isn't the same as ours.  Maybe he thinks the same about food - he sees us all eating, but maybe he thinks we were all just like him once and then started eating...as he gets older the conversations and thoughts will no doubt develop. I do feel sad for him as he experiences pain, needles, drugs, poking and prodding at the hands of many..... such a necessary thing though.... I cry in private, Sam needs me to be confident and upbeat. Yay for tears, or I would implode.

This afternoon Sam and Francis escaped home for a few hours, which was great.  Potentially Sam, if no surgery is required, will be able to get to school this week, as it is only his 8pm dose of IV antibiotic that it keeping him in hospital.  We are looking forward to having Grandma to stay from Tuesday, which is a total blessing as Francis is away for most of the week for work, so if I am in hospital sleeping with Sam each night, Grandma can be playing scrabble with my girls - she always wins, but they like the challenge.

Who know what your week holds - rest up in the fact that the Lord God, maker of Heaven and Earth is watching over you and has plans for you. 

X Shirley

Thursday, March 31, 2016

Urgent Surgery Today

So Sam has had a great 10 days at home.... Until last night! 2am he woke with a really high temperature, 3am it got higher so I gave him pamol ...4.30am he was up to 40 C + and a bit delirious, so I hooked him off his 3 feeds and rushed him into Starship. It has been a long tiring day with Sam fighting needing oxygen and constantly fighting his nasal prongs.

Blood results quickly showed he had a blood sepsis most likely in his central line. He was given three antibiotics and many discussions were had between the various teams - Infectious Disease, surgical and gastro. It waa decided that as this was the second time in 3 weeks he had a life threatening sepsis, that the line had to come out. At 5:45 an orderly appeared to wheel Sam down as there was a spot on the surgical list. Sam was really exhausted as he hadnt slept since 2am, so he was loud
and screaming he didnt want to have surgery. He was really scared as well as thrashing about, so the poor wee man knows what is happening and was so unhappy. I cuddled him as he thrashed about. We talked about how he felt scared and I told him when I felt scared that I remembered what God said, 'Dont be afraid, for I am with you'.... And I asked God to come and be with Sam and help him cos he was afraid. I sang and cuddled and prayed in his ear ... And he relaxed and became calm. When I stopped praying he asked me to keep talking to Jesus about him. I love that faith is real and tangible and impacts every day life.

Once he was asleep I came back to my room and cried - tears of sadness for Sam, tears of grief seeing him struggling, tears of helplessness that I cant protect or take away his pain. Tears of tiredness, tears of 'I dont even know really what for'.

I sit in his room waiting for the call from post op to summon me down to get him. I am hoping and praying that he responds ok to the anaestetic and isnt violent like he has been.

Again friends and family have stepped in to support the girls to get them to piano lessons after school to keeo their routines in place.

Although it is disappointing he loses this line, Sam now only uses it 3 times a week now - Tues and Wed he has TPN and Sat he has clear fluids. His IV Nutrition is only 16% of his calorie and fluid content, so maybe, just maybe the team are looking at how to increase calories in his GJ so that he may not need another central line - this is truly an amazing thought!

Good sleep is our most important thing tonight so Sam can recover and get stronger, as well as the bugs in his blood to be hit hard by the antibiotics. Also for the girls to feel secure and content inspite of the upheaval.


Saturday, March 12, 2016

Roller Coaster .... Again!

So at 10.30 yest morning we we told that Sam had been taken off the surgical list, as the blood cultures from his line had come back negative. It was all very bizarre as his feeds were all still stopped at 2am.  Anyway, again the frustration of so many teams involved (gastro, surgical and resp), plus whatever the hospital politics are it has been a weird 24 hours.

So the good news is that the line has been saved, the bad news is that he needs a 10 day course of antibiotics, 3 times a day. The good news is that he is well enough to be up and about and all seems normal, the bad news is that this drug is only licensed for adults, so he must stay in hospital for the duration. 

He is still battling with something in his lungs so needs oxygen at night, which he is not impressed with. At 2am we had a bit of a wrestle to get them on (I could be a hostage negotiator with all that goes on in a day in his hospital room!). At one point I looked at the nurse, who had seen me intersct with him for about 10 mins, and said, 'I know we have an anti smacking law, but he is just being plain naughty and he knows I am powerless and I am over negotiating, so I am going to parent him now as I see fit and that will involve a smack'. 2 mins later and prongs were on.  This isnt a political blog, but  he anti-smacking law inhibits me parenting Sam and also he has learnt defiance due to it, and in his case he needs to comply for his health.  

This morning Sam was blatantly rude and defiant when he needed to do his chest physio, he was wasting her time and mine and he needs to donthese exercises to strengthen his lungs. I looked at the physio and said the same to her as I told the nurse at 2am .... Again the negotiating, begging (both parties) came to a complete holt and the physio work was completed for the benefit of Sam. I really am angry that I feel watched and in potential threat because I am helping my son, and yes, that involves a smack sometimes.

At 3am the Dr was called as his oxygen requirements were going up. She was happy that trhe antibiotics he is on are broad and will cover his chest.

So the upshot of last night is I am a bit weary.... But not enough to escape hospital! I write this as Francis drives me and the girls to Auckland airport. We are heading to Wellington for the weekend. 1 pm flight and we have great plans of discovering Wellington this afternoon (I have been mumbling something about needing a Nana nap). Tomorrow we will have the day at TePapa. The girls and I head back to Auck tomorrow night so I will see Sam tomorrow night. It is weird/hard/awful leaving him, but his special nurse 'T' is going to hang out with him so we can take his break. The girls are so excited and its hard trying to be excited feeling like you have left your left arm unwell and in hospital. The medical teams were happy for me to go as he seems stable and if anything changes I will just come back earlier.

The plan this week, all subject to Sam not throwing a curve ball, is hopefully we can juggle his drugs to 6.30 am so he can have day release and get to school for half a day, returning back to hospital for his 2.30 pm dose. 

Its been a full on week - I think I handle them worse as I get older. Sleep depravation is truly a form of torture ... Looking forward to some shut eye this weekend.

X Shirl