Thursday, November 26, 2015

Does Starship have a Tooth Fairy?

Today Sam went to theatre for an elective - 3 different teams were organised to do their bits under the one GA - brilliant co-ordination by Sams fabulous Nurse Specialist as this was no mean feat to sort!

We went down at 1 pm and each team wanted to draw on his body where/what they were doing - Sam wasn't having a bar of it as he has heard me countless times tell off his sisters for drawing on themselves.... so after some convincing he wrote his name on my arm and then the Drs wrote on him (arrows to indicate where!).  The permanent marker should wear off in a few days.... sort of my Starship tattoo!

The urology team had the first slot and they were putting a teeny camera into all things urological - penis, ureter, mitrofanof, bladder and taking a look and a measure to assess how everything was. They will now assess and make a plan for what is the best for Sam and his drainage and probably he will have a surgery booked in shortly for that.... kind of the 'cruel to be kind' approach to parenting, which I wish we didn't have to do!  If a re-jig of his plumbing helped him not to get back to back uti's that would be fabulous, but some short term pain to be had in the process.

Then the radiologist jumped in and took a biopsy of a pocket of unexplained fluid sitting between his lung and chest wall, then the dentist popped in and gave him a total oral overhaul!  His teeth now look white, except the two that are sitting in tub on the table beside me!  He has had two wobbly teeth for a while, but as he doesn't eat they weren't coming out  anytime soon so they decided to take them out.

He looks cute without them, but he is hard to understand, but that could also be due to the slurring post operative!

For the first time ever he woke up not violent!  He was still shouting at me to 'go away, go home, I don't like you Mummy', but he wasn't struggling or throwing things.  The anaethaetists thought long and hard what to do to try and improve things, so whatever they did seemed to work at treat!

He has been sleeping on and off and as nothing invasive or surgical happened, we should get home tomorrow.  He will be sore, as his gums took a hammering and I'm guessing all the other parts that were poked and prodded will be a bit sore, so we are happy to stay in and his pain to be monitored.

So we look forward to hearing the outcome of the procedures with a view to improve his quality of life.

He looks so peaceful, our brave brave little man.

X Shirley

Saturday, November 7, 2015


6 Days ago we were at the pre-race event, collecting our race bibs and getting excited about running for TEAM SAM.

Well we did it!  Thanks to you all for your kindness, generosity, encouragement and support.

Here are some shots to prove we did it!  All up, Team Sam raised around $13,000, with the added addition of Sams cousin Carolyn from Owaka.  Carolyn came on board as a Team Sam member and raised over $500 in 2 weeks! 

The before shot of Me, Elaine (Sister) & Carolyn (niece) was at 4:45 am, about to board the boat to get to the start line and watch the All Blacks in the World Cup Final along with thousands of others on the big screen. It was such a fun atmosphere and a great way to start the run.

This one was as I spotted Francis, Nana, Sam and Jasmine as I came into the final 100 m stretch.

And this is Sam thanking Mel and her team from Peak for Life that helped us raise over $1000 for Starship.

The generosity of so many is very humbling and please know that it will go towards helping kids of NZ get the best treatment they can, to help them live a life of fullness as they live with health issues. Thank you seems easy to type, but know that my heart is so full as I see the impact on lives every time I step into Starship.

Yesterday I stepped into Starship again with some more urine samples from Sam.  His uti is not clearing and today will be day 9 of having a daily visit from a nurse to do his infusion.  It is unclear at this stage if they will continue the drugs he is on for a longer course, or wait and see what 'grows' from these samples and change the antibiotic.  He is in pain and uncomfortable each time I drain him, but otherwise he is happy.  Yesterday at school he bought an ice block, so he could be like one of the other kids... and he licked it about 8 times.... well put his tongue to it.  So he was so proud of himself for doing that. We continue to work with Sam to try and engage him in food play and have a relationship with food that isn't currently there.

For me, I have had an interesting journey this past few weeks.  I have tried to hold down various jobs over the last 3 years, but it has been a hard juggle with tiredness, hospital admissions, having to always be thinking of sorting Sams drugs/appointments/drains/pick ups from pharmacies etc and the stress I put on myself as flexibility of my employer was needed.... at times it seems Sam is a full time job.  It costs a lot to have a 'Sam' - car parking, petrol, prescriptions that aren't covered by Pharmac... but this has only been a part of my motivation for working.  I think work made me feel 'normal' and I could pretend I didn't have a chronic kid that isn't going to get better. When at work I wasn't 'Sams Mum' that was powerless (languishing in hospital with wrong appointment times and at the mercy of each medical team and waiting for lab results etc.).  I was someone that for a moment mattered and felt that I had value, that isn't bestowed on stay-at-home-Mums or Mums of sick kids. At times the rhetoric in the hospital is that you as the parent know your kid the best, yet at other times your opinion and your time counts for zero.  It can be very disheartening.

Well, I'm not meaning to write a sob story.... but rather to say that I have realised I have tried juggling work, family, Sam and at the end of that I am tired and starting to drop the ball with Sam. He is now on different meds that need rotating, which requires me to be aware of what/when and then changing it.  As I get older, I can't bounce back as quickly from being up multiple times in the night from pumps alarming or Sam being sick.  I have realised that I am in a privileged place to be Sams Mum... and Jasmine and Candaces.... and I want to do it well, and I can't do that when I am so tired from working and juggling.  So I have finished paid work and am now a member of a privileged bunch of unpaid workers... job description is very broad and also very weird (my hand bag had urine samples in it yesterday!).  I promise not to revert to wearing big Ts and leggings and will still apply lippy!  I know that God can provide our physical needs.  But I am looking forward to season of calm .... it may not look calm to people watching on, but to have the pressure of work gone, it will be very different.  It means that when I have appointments, clinics and procedures with Sam, I won't have the pressure of making up work hours when I get home that night.... I can get home and just be Mum.  It does how ever mean that I can't roll out my usual excuses for why the laundry is so far behind and why the house is messy... I would gratefully receive any plausible explanations that I can use when the laundry is still backed up now that I am not working!

But I finish on a high note... THANK YOU everyone for your generosity, encouragement and kindness.... it takes a village to raise a child, it seems to take a small city to raise a Sam!

Thursday, October 29, 2015

3 more sleeps....

.... before we get up at 4am to get across to Devonport, north Auckland so we can watch the world cup final on the big screens at the starting line of the Half Marathon!  I am hoping the euphoria of an AB win will help my legs run faster!  If we lose, well I will use that sadness as an excuse for a slow time (not the lack of training!).

We had a big day in hospital today.  We started with a urology review.  Sadly Sam has another UTI, after coming home in pain grabbing his crotch  yesterday.  So we had plenty to discuss with the surgeon as we discussed his 21 uti's this year, the source/type of bacteria, the effects on Sam and a plan to help his drainage to minimalise them.  The outcome is that next month Sam will be booked in for a full urological review.  This requires a GA and the surgical team will do exploratory scopes of his ureter, mitrofonof, and bladder.  From this info they will make a plan with what they think could be the best way forward for him.  We are hoping this will be a day procedure and then the team will review/think/plan and then sometime in the new year put in to place their plan, which will probably be some kind of surgery.

Urological clinic was held with the gastro team in situ and it was great to have the teams in the same room.  We talked through gut flora and it was agreed we need to hit Sam consistently with concentrated cranberry (he would need 1.5 litres of cranberry juice to impact him and that isnt possible to give to him with his current liquid needs), probiotics and a prophylactic abx..... so lots to manage and lots to pay for (not funded) and lots to organise, but hopefully it will be worth it for Sam.

At that point the Respiratory Dr came in to give me feedback from Sams review 2 weeks ago.  Lungs generally are ok, look overall better than 4 years ago, but do have a few patches of disease.  They also discovered an area of fluid between lung and cavity wall that shouldn't be there.  So we then headed down for another chest xray.  When Sam has his urology GA/review the respiratory team will also sneak in and take some fluid out of that pocket to try and see what it is.

Then we headed down to Daystay for Sam to have his first uti antibiotic infusion. At this point I took scripts over to the hospital pharmacy and left Sam to get hooked up and have his infusion to speed up the infusion as I needed to get Sam back to school by 2:15 for school assembly where he was getting a class prize.  I got back from the pharmacy about 40 mins later to find his infusion hadn't even been started!  I asked why not and was told that Sam told them he didn't want it..... UMMM SERIOUSLY?!  At that point I was least pleased as I explained to the nurses that Sam was in fact 6 years old and didn't get to call the shots!  It was so frustrating as it meant that we missed assembly, I had to make alternative arrangements for the girls after school, I had to pay extra for the crazy priced car parking, had to phone Nana to say don't bother going to assembly, had to call his Teacher Aide/School to say he wouldn't be back, missed my afternoon appointment for my Ministry of Health funding review and had to reschedule for tomorrow which means I have to change my work hours (I work on a Friday which is why I planned everything for Thursday), which means Francis has to leave for work super early to drop Sam at school... etc. I get so frustrated that if I am not constantly with Sam inevitably something happens ... or doesn't happen.... the snowball affect on the family can be huge.  I just won't leave him in future - every time I try it's just not worth the fall out and angst on the girls who are left stranded...

Speaking of Siblings, the girls are both doing a 'Sibling Day' next Saturday.  No sick kids allowed - only healthy siblings and they will be with other siblings in their age groups doing a day of fun activities/food/fun which we are hoping can be a positive thing for them as they hang out with other kids that will understand their world.  They are amazing young ladies but they do naturally get very fed up with the last minute changes and how much attention goes to their brother when needs warrant.

So we have 9 days ahead of a nurse popping in for an hour every day to do IV antibiotics.  We talked through today the scenario of us being on holiday and the need for me to be able to take meds/pumps etc with me and do it myself.... so I am going to have training when Sam is in having his scopes.... and then I'm hoping that with that signed off, we won't have to have our house visited every day by a nurse and I can just do it..... but that's a little way off...

This morning I had breakfast with some of the Team Sam running team - Sarah (my sister n law) and Mel - the owner/trainer at Peak for Life.  It has been a great month working with Peak and meeting the ladies there and raising funds for Starship.  We had a full page front spread in the local press and it was very cool that that inspired some to give.  We have nearly hit our target of $10 k for Starship..... with 3 days to go I think we could get there. I still have stuff to list on Trade Me to sell, so we could get there.  We are so very grateful for all the support, moral and financial.  I am not naturally a runner (state the obvious!), but it's always a good discipline for me to do and I am always more motivated when running for a cause. THANK YOU everyone.

Right off to sleep - apparently good sleep is important for running....... maybe if I stay up late I can also use that as an excuse for a bad time.?

One final note... go the ABs and in this context that could be antibiotics or the All Blacks - I'm going for both!

Monday, October 19, 2015

A weekend to remember!

So much happened this past week:

1.  Sam gained a brother and named him Sammy James Junior (more on that below)
2.  We ran a stall at the Otara Markets and made $661.60 for Starship (Woohoo!)
3.  We exercised like never before at PEAK FOR LIFE and raised $560 yesterday (Double woohoo!).

Firstly meet Sammy James Junior.  He landed from the UK on Saturday at 3:58 pm, weighing in at about 1 kg.  He has thick dark hair, olive skin and stomas just like Sam. His accent varies according to whose hand is up his jumper, but it's been amazing to see Sam come to life and communicate with this little guy with the same tubes as he has.  We are so grateful to the volunteers at PNDU in Australia who made this happen for the under 10 year old kids on TPN in Austr/NZ.  Truly Sammy Jnr is going to be a fabulous tool to work with Sam. Just tonight Candace was working Sammy Jnr and asked Sam if he had eaten food today.  Sam said no, then Sammy Jnr said, 'I think I might try and lick some food tomorrow, would you like to try with me?.  Sam is open to anything when his 'brother' suggests it - and yes this power has already been abused by his siblings who were quick to figure out how to make it work for them!

2.  If people watching is your thing, then the Otara Markets is a weekly event that is such a fun vibrant place to hang out and a must for you!  If the sun was shining, you could have been mistaken for thinking you were in the islands somewhere with the sounds, smells and sights.... but we were there selling clothes that had kindly been donated to us from a merchandiser.  They were all new garments/samples of clothes and we had a busy stall.  Candace also stood around with a Starship bucket and people were very generous to give (& yes my 12 year old is as tall as me!).

Sunday saw us up shouting and yahooing at our TV set like most of NZ. The All Black win was a good dose of euphoria which would help us with our Peak For Life challenge at Sunday at 11.  About 30 people came - gym members and extras and we had 3 teams with full on boot-camp type challenges.  It was lots of fun, heaps of energy expended and I have to say that my legs are killing me today!  Running just uses the same muscles, but flipping tractor tyres up and down hills, running up hills to hang on a school playground etc uses a whole different set!  It was a great morning and so appreciative of all those that turned up.  Another $560 raised for Starship.

Tomorrow Sam and I head in to Starship for 11am.  He is on the afternoon list for a broncoscopy, which requires a GA.  They plan to biopsy his lungs, take a look and see what state they are in and also do some chest xrays - basically find out what is going on and see if the pseudemonas is clearing.  He still is on twice daily abx nebulisers and seems to be doing well.  Last week his oxygen testing over night showed he had good saturation, so we are hopeful things are looking good. Depending on how he copes with the GA we may get home or may need to stay in.

Thursday night is our movie night and the tickets are selling really well. We still have a few tickets if you want to come, so you can message me or call Peak For Life to book a spot.  

Hoping you all have a good week and I will update you post procedure and post movie night!

Then it will only be 1 week to the actual run! Due to hospital I need to get up early and run 2 hours tomorrow before we go in to keep on schedule.... am hoping for rain/gales or isolated tornado.... but if not, I will just get out there and pound the pavements!


Thursday, October 15, 2015

Term 4 and back to school!

Highlights of School holidays.  Camped in our caravan with a bunch of friends (new and old), Day at the Zoo (amazing!!), lots of cousins to play with! Special family meals on both sides of families - food, laughter, catching up and celebrating life.  Bee got a makeover as Sam discovered false eyelashes in the makeup aisle of Kmart... he brought them up to me and said, 'can I buy these for Bee, he doesn't have any'.  I couldn't say no and for $5 that was a very fun piece of entertainment and joy to us all.

Lowlights: 2 days in hospital in week one due to a UTI and also a day in week two.  Sam continues to be on antibiotics having daily visits for IV infusion.  Also being hounded by his sisters and finally giving up - the pigtails tell it all - photo to follow!

Yesterday Sam got a haircut and looks much more handsome - still has curls!

Next Tuesday Sam will be admitted to Starship for a planned procedure under the Respiratory Team. He will have a GA and they will scope and biopsy his lungs.  They need a base line when he is well, to see what is going on in his lungs.  They want to also see if the pseudemonas is clearing from his lungs - we hope it is due to his twice daily gentimycin nebulisers, but next week we will know more. They will also xray his chest.  2 nights ago I ran an overnight oximeter test on him (oxygen/heart monitor) and the results were very positive - with more information they can make better decisions on his care.

In just over 2 weeks time Team Sam will be running the Auckland Half Marathon.  Whilst the rest of the world is glued to the Rugby World Cup, a few thousand of us will be plodding over the course. I've really enjoyed training this year, even though I started training late due to Sams long admission in July.  Each day when I think of 20 other things I'd rather be doing than training, I think of Sam and kids like him who have no choice but to have difficult procedures done to them... and then it doesn't seem that hard afterall and my internal whinging is kicked to touch as I realise how fortunate I am to have good health to be able to run.
Meet Aunty Sarah - The fastest and fittest member of Team Sam

Check us out at:Team Sam.  We are so very grateful for the generous people that have come to events we have run or donated money.  On Saturday we will be at the Otara Markets selling clothes at a stall.

So life is full as we focus the next 2 weeks on fundraising for Starship and running our race well.  We are very grateful for each other and looking forward to the spring/summer ahead... 

Best wishes

Tuesday, October 6, 2015

A busy time ahead...

Bradley Cooper is helping raise funds for Starship... he just doesn't know it!

Peak for Life, is a local gym that has got on board with our fundraising goals and are helping promote events through their members. The gym owner, Mel, is all about making the most out of life by being healthy.  Her emphasis is on nutrition and exercise and life balance, so it's a really good fit, as Starship hospital is all about nutrition and making the best quality of  life for the kids of NZ.

Girls Night out!
22nd October 8pm

Held at the Monteray, get your girls together and come along to watch Burnt with a glass of wine.

$25 per person, all money raised goes to Starship

Peak for Life Challenge day
18th October 9am - 11am

Held at the studio for charity, you will be in teams to find clue, tasks, challenges along the way for 2 hours.

$20 per person, all money raised goes to Starship

So life is busy with longer training runs and sorting out things for the above. 

This week has been total fun for Sam with him meeting many of his cousins for the first time. His Gore cousins have been staying, as has my sister from Napier and her crowd. Tomorrow my Aussie Brother and family arrive, so we are all excited about that as no one has met Levi, the youngest member of my extended family.  So a day at the zoo was a big outing for Sam today, but he mostly coped ok with it.  Lots of play and trampoline wrestling and delightful antics with his cousins has been fabulous.  Tonight there was the usual 'concert' put on by the nieces and nephews (I remember subjecting my parents/family to them), and it was hilarious and lots of special memory moments.

Sam had daily nurse visits until yesterday for antibiotic infusions,so just a normal week for him.  It is hard fitting in all his fluid hours with him wanting to charge around with cousins that can have a longer bedtime, so that is a bit of a juggle and something that I am always conscious of.  

So all kids are tired for sure, and another fun filled day of activities tomorrow - going to see the play, 'The Velveteen Rabbit', courtesy of Make a Wish Foundation and a picnic at Devonport.

So the holidays have been great for Sam and I don't think he is missing school at all, as too much going on here!

X S 

Tuesday, September 22, 2015

Long overdue update...

Botany and Ormiston Times : Botany and Ormiston Times Thursday September 17 2015, Page 12

So I've been a bit quiet for too long - so much to say, so little time to put fingers to keyboard.... a little of the time has been filled with my training runs.  With only 5 + weeks to go, training is in full swing - click on above!

On Sunday we took the caravan to a beautiful beach nearby for the day - Sam loathes sand and all things to do with the beach (noise of the waves, sandy feeling, wet feeling, shells etc et al....) so we felt this was a good compromise - he sat in the caravan and played with his cars and watched cars drive by whilst we enjoyed the scenery and had somewhere to cook and eat.  The other very useful thing was I went for my 12 k run and had somewhere to shower and then relaxed with the family!  So our trial day out in the caravan was a success and also a useful exercise to see what else we need and what we need to tie down when moving it.  We aim to get brave and head away for a night soon!

Sam has been fabulous - he has had another uti, but it cleared up for the first time ever on a medicine that we always use that normally doesn't work!  He has had a school disco (hated the noise and the dark... on no wait, that was his Dad......), had a pirate day at school (loved that!) and was Star of the Day yesterday as he had really good phonics!  Today he came home proudly spelling 'ook' words - Look, Book, Cook, Hook and Took!  So he is a sponge and loving learning.

We have had a psychologist involved to help us with feeding and oral skills and that has been fabulous - really sensible doable ideas that help us understand how a baby learns to eat.  The first thing a baby does when learning to eat solids is promptly spit it out... and that is a normal piece of development that gives the child confidence they can protect their airway by expelling food.  This was a lightbulb moment for us as Sam has no clue about how to even spit anything out.  So we now have a weekly family event on a Sunday afternoon - if you drop in then you are most welcome to join in. It involves us sitting around as a family with a variety of food and an ice-cream container.  We all take turns taking the food and putting in in our mouths and then spitting it into the container - it is seriously a lot of fun and neat to see Sam starting to play with food.  We need to get him confident that whatever he puts in his mouth he is in control of and can get rid of.

He now is on 3 nights of TPN and all 7 nights he is on 2 other feeding pumps into his GJ.

On normal child development he announced to Jasmine today, ' I DON'T want you to be my sister ANY more!' and 'I DIE you'..... so normal family stuff going on.  He is also totally infatuated with getting his lunch box ready for school. It takes at least an hour each afternoon of him going back and forth to the fridge.  He grabs a variety of interesting objects and has gone to school with curry paste, a bag of radishes, a box of jelly crystals and a satchet of yoghurt powder.  He always take a mandarin and an apple and is very keen on a chunk of cucumber.... is so funny/endearing watching him potter about with great intensity, packing and repacking his goodies (which always come home slightly jaded and mashed up together).  But we don't care - just lovely to see him learning.

I leave you with some photos of Sam to update you and an apology for being so slack at this blog - I do like writing but it takes time to write well (this is a rushed one!), but I am now working 5 days a week and any free time is taken up either training or normal life stuff, or like today a trip into Starship to do Sams monthly blood tests.

AND before I forget, a very special THANK YOU to the staff at Ernest & Young Accountants in the Auckland office, who did a 12 hour tredmill challenge a couple of weeks ago - the tredmills were on non stop and 60 staff each did their 20 minutes and collectively raised $5,800 for Starship!  It was such a fabulous effort and thanks must go to Aunty Victoria who worked with the team at EY to get it sorted.  A special thanks also to CHRIS BARRETT, the gym manager for his hard work.

In 2 weeks time Sam has a respiratory consult and then he is booked in for a GA to do a broncoscopy, to try and see what the state of his lungs is.  He continues to do twice daily nebulisers, with another 4 weeks to go.

Ok, gotta fly X

Team Davy

Thursday, August 6, 2015

End of HPN Awareness Week

Hi everyone

Today an article was in the local paper about our special Sam.  It has been HPN Awareness week and the PNDU has worked hard to try to educate and inform people.  As medicine advances and as time goes on, the HPN community is growing - more people are able to live a relatively normal life being supported by nutrition that goes straight into their veins. This is for a variety of reasons - a bout of illness has damaged the gut, Chrohns Disease, genetic issues (as in Sams case)etc..... but our community is still really small compared to the other awful big diseases out there.  This has its own challenges within the medical community, resources available, supportive community help aswell as living and working whilst not being able to eat.... 

I leave you with the article that came out today in our local paper, but I want to acknowledge and honour the many people that live graciously on HPN.  Many I am in email contact and unlike Sam, they hook themselves up.  This small army of individuals inspire me as a carer of a child on HPN.  I see their adult lives and the hope and joy they have in spite of their challenges and it fills me with hope for Sam and his quality of life.  We are very grateful for HPN, for without it we wouldn't have Sam.  

Enjoy the read..... but if you've been following the blog there isn't anything that you probably don't know anyway!

Botany and Ormiston Times : Botany and Ormiston Times Thursday August 6 2015, Page 0

Tuesday, August 4, 2015

Crazy busy.....

So I feel like I haven't stopped running since we got home last week..... sorting drugs/ his prescriptions of liquid feeds, IVN deliveries, sorting out stoma bag orders and remembering to fit in a morning and evening nebuliser....

Jasmine is also really sick with a suspected Strep throat, so she has been throwing high 39 + temps since Saturday and needing some TLC and is very miserable......... so that is a concern......

It is 11:30pm and I feel like a scene out of a 'Middle' episode - I am on the couch in the dark, with piles of washing on either side, 2 doors leaning against the couch and a toilet and shower door also for decoration!  If police walked in they may think we have been ransacked and the burglars have left a mess on their way out.... but it's just us living!

So, I could tidy the mess, or I could update the blog.... which this week I actually feel like I really really want to as it is HPN Awareness Week.

Check out this link below - very short, cute and delightful.

Sam is doing great with being a 'fire breathing dragon'.  He used to roar as the smoke comes out around the nebuliser mask and we would all scream and run and pretend to hide and he'd laugh and repeat..... now he roars as the smoke comes out and we all look blankly at him and carry on with our day.... and he just keeps roaring in the hope we will react. 1 week in and we can't be bothered, but I figure with the roaring and the big deep breaths sucking in getting ready to roar, that the stuff has no choice but to get down deep into the lungs to help heal them.

He has not had a great week at school - a number of Time Outs and stubborn moments - always takes him a bit to get back into routine, especially after 6 weeks out.... so he has been a little sad and frustrated with life.  This afternoon he announced he was angry and he was 'gonna bust stuff by throwing my cars' - he is so cute even when a monster.  He didn't bust anything cos all I have to say is that 'we will be really disappointed if you do that' and he is sobbing in tears begging forgiveness, so he is fragile as he settles back into family life and school routine.

Tomorrow we have to do an overnight room air only oxygen reading test, Thursday our home care nurse is popping in with supplies and to check up on us.  Friday Sam has cross country at school and he is determined that we all be there to watch him 'playing cross country'.....  Friday for me I simply hope that the toilet is in the bathroom and not my lounge and we get to relax in a tidy ordered home and that our renovation doesn't drag into another week!!!  Please no.....

I hope your week is going well. 
X Shirl

Wednesday, July 29, 2015


Yes we made it home with bags of new medicine and supplies, multiple trips into the car with 'stuff'.  Sam made school for half a day and then 'home'...... 'home' as in where we all live, but 'home' is currently a minor building site with no toilet or bath or internal doors and lots of mess!..... we decided to make the most of having Sam in hospital and renovate the bathroom - it seemed like a great idea at the time.... and actually has been just the right time to do it as we had access to hospital ablutions!  But the project ran a few days over due to the usual hiccups that come with moving walls and plumbing.....

We have two new toilets in our lounge, in addition to the shower, bathroom door, vanity and cabinet.... so our home is total chaos, but its nice to all be back in it, even if there is grumbling from some quarters as we have to trudge in the rain to the caravan on the back lawn for some relief!  It's just like the 1930's having an outhouse!

Enough of our ablution issues... I end with a fabulous story about a very kind hard working man that came to our house at 8:10 pm tonight.

This morning I was called at 8am and told Sam's nebuliser compressor unit had been ordered and would be delivered today.  At 5pm I called my contact to say there hadn't been a delivery or a phone call and could they look into it.  They called back to say the delivery guy was really busy but would be at our place about 7.  At 7:45 he called to apologise and say he was 30 mins away.   He arrived at our door apologetic and explained he had had 8 elderly patients that he was delivering things for and he got delayed sorting out their beds/equipment and that it took longer as many of them were very unwell.  He nearly called to say he would drop it in tomorrow, but decided not to.  He had one delivery after us and then he would head home to his family, ready for a 6am start tomorrow!  He was the nicest guy and when I thanked him he was so gracious and caring and I'm sure he isn't paid top dollar, but worked hard knowing what he does matters..... and it totally does matter to us.  

We hooked Sam up to his new equipment and we hope and pray that his lungs benefit from the drugs he inhaled, and will be inhaling for the next 3 months, twice a day...... and we pray a blessing and hope on the delivery guy for sacrificing time at home with his family, for ours.

Sleep well X

Monday, July 27, 2015

So near... yet so far.......

Home is a word being bantered about more often now.... but it is so hard to get all the pieces together to get out the door!  It is definitely harder to get out of hospital than in!

Today I didn't go to work so I could be here bugging people to make sure all the pieces are being laid in the right order, cos if they aren't it can easily slip us into another day and another and then it's Thursday which means might as well give up on Friday so let's just stay the weekend!

On Friday afternoon we had a discussion with the respiratory Dr at 3pm about ordering home oxygen. The comment was made it took 48 hours from ordering to get the oxygen in the home. They chatted and decided it wasn't worth doing it then as it was Friday and they would wait til Monday.... so they had another discussion today and they couldn't confirm if it had been ordered today or not!  So days dribble by with not much to show for it.  In my thinking (& what I told them), was why not flick them the email on Friday afternoon and risk someone being in to start the ball rolling, or worst case scenario they see it first thing on Monday morning....  but no, plod plod plod.....

This morning we waited until 12 for a chest xray.  The gastro consultant was asking me about who Sams cardiologist was as they wanted to talk through with respiratory the various issues.  I made the comment that wouldn't respiratory want Sams new chest xray results first, so they could have an informed discussion.  I explained we hadn't had the xray yet - it seemed no on had booked it... so this kind of cross team communication really slows down the process.  It was decided on Friday the need for an ECG of his heart...... and today after me asking many times it was finally booked at 12:30 today.... so we now await a time - again it could have happened today if they had done it yesterday.

Today I had nebuliser training.  Thankfully no rocket science involved and looks pretty straight forward, but it will add to Sams daily care regime and will be time consuming.  It will take around 15 minutes every morning and evening for 3 months.  Plus, we have to boil sterilise the parts and dry them.  It is a standard Cystic Fibrosis piece of equipment and had he actually have CF we would also qualify for the microwave steam steriliser.... but alas no, we have to boil it in a pot.....  At this point it just seems means, that due to the fact Sam doesn't fit the exact criteria we can't access the same care - physio/equipment - yet he is having identical treatment for virtually same symptoms..... maybe there are free steak knives somewhere we get which I didn't read in the small print??  I don't begrudge anyone what they have to help them cope with their childs awful condition, and I understand resources aren't infinite...... I think beginning week 6 in this place skews my judgement over what is normal and fair and right.....

On that note, I hugged farewell to a very special family that took their child home today - very very cool to see them on their way home after a long and tough stay. 

On Sunday as a family we read Isaiah 61. v 3.  It talks of ' Put on a garment of praise instead of a spirit of despair...'.  This week I've been thinking about this as it's easy to get down contemplating Sam and his situation.  A jacket or jumper is only of use to take away the cold when it is put on, but I have to put it on for it to take away my cold and make me warm..... as it is with life, I have to choose to pick up the jumper of praise and put it on me and only then does the despair go away.  I don't want to be despairing and sometimes in my stubborness I'd rather sit their and shiver and moan..... but it totally is true - hope comes when we are thankful and grateful and only then does the cold dissipate.   Starship is a myriad of things. It is a place of hope and healing, sadness and bad news, joy and laughter, miracles and milestones..... it is like a weird kind of family..... So we are thankful for all that Starship is to Sam and our family.......and just like any family there are bits that drive us crazzzyyy!!

Night night.

Friday, July 24, 2015

End of another week....

... and we are still in with vague murmurings of discharge.

A brief summary, cos no energy to waffle (hooray you all shout!)

1.  Still needs 02 at night
2.  Concern as to why - is it a more sinister thing?
3.  Want to do a heart ECG - need to rule out blood flow issues
4.  Monday morning will do another chest xray
5.  Based on point 3 & 4 results depends on next course of action.
6.  CAT scan required on his lungs in next few weeks.
7.  Oxygen being ordered for home (takes 48 hours to organise) so that would take us to Wed discharge at earliest.
8.  Home compressor for nebuliser has been ordered.
9.  Francis and I need training on how to do antibiotic nebulisers

The weekend ahead involves the usual netball, hospital zig-zagging, painting the bathroom and family celebration on Sunday, all hopefully with long nights of sleep thrown in.  I now know why they use sleep deprivation as a torture technique.........  we hope you have a nice weekend.... 

Monday, July 20, 2015

It's been a good day!

Sam had his 30 min physio session this morning (see blurry photos below) followed by a chest x-ray.  The good news is that the xray showed a marked improvement, so it was decided Sam didn't need a scope or wash out - so no GA to recover from either.


We are delighted by this and so glad for his progress.  This afternoon he ran around lots but then was exceptionally stubborn and refused his afternoon physio.... so as I entered his room returning from work, Sam said, 'hi Mum... I wasn't a good boy this afternoon!'.  I commend him for his honesty!

This afternoon the girls hung out with him and had wheelchair races and we ate as a family in his little room - nice to catch up on the girls first day of school.

They are all heading home now and the plan is that I will sleep here and maybe Sam will get to school for a chunk of the day tomorrow.  He needs to be back for his 4pm meds.  He is very excited about getting back to school and we are hoping that parents are being responsible and not sending their kids to school with green runny noses!

Right, the handover nurses just coming and I need to do Sams 'bubbles' before he gets to sleep.

X Shirley

Sunday, July 19, 2015

Into week 5

It's quite hard writing the blog as I am conscious that I want you to like me.... but sometimes if I really wrote what I thought or had happened and my response to it, I really don't think you would!

I had been fuming and plotting my words all afternoon, looking forward to rant and spew forth my justified frustration and sarcasm and blah.  But as I stretched my hands and cracked my knuckles flicking open my laptop, I feel uncomfortable.  With hindsight I could often do things differently or better.  So tonight I choose to not rant - not because I think you won't like me/what you read, but because with a rant it tarnishes those unfairly as it is only my perspective..... my tired, 'protective mother bear' perspective.  And in the world of social media that we now live far too many people tarnish others with no accountability for the writer and no right of reply for the person.  Instead of having a tantrum in arial font, today I chose to take my rant to God, knowing that he gets it all ... and in the quiet post-rant, His peace comes and I have renewed hope and joy for the week ahead, in spite of it including a procedure for Sam under GA!  Discussions that have been productive and hopefully helpful for enhanced care for all patients have also taken place, so I'm happy with that.

Last week Sam was started on two strong antibiotics.  On Thursday he had a chest xray which showed that his lungs were in worse condition than the xray 3 weeks ago.  This was disappointing and very concerning and now the Respiratory Team has stepped in to take over his care.  This we are relieved about and had been pushing for.  Basically the pneumonia (which was the catalyst for this admission) should have run its course and be at a much better stage - but it isn't.  The concern is why he still needs oxygen every night and why his lungs are not improving.  He runs around all day and seems fine apart from an occasional fruity cough. As soon as he is asleep the lungs seem to get plugged up with gunge and he needs oxygen.  They are not prepared to let us home (even with oxygen for at night) until they have figured out more.

The plan is hopefully tomorrow or Tuesday he will head to theatre for a bronchoscope and bronchial lavage - looking inside his lungs/bronchial tubes and then washing them out with saline and suctioning out the goop.  This is a procedure often done on kids with Cystic Fibrosis, and various pamphlets have been appearing in our room with this as the heading. Also Bronchietasis is a word being bantered about.  Sam doesn't have CF, this was genetically ruled out when he was 2, but he is presenting with similar symptoms.

It's not great news, although it's hard to accept it when you have a hilarious happy boy that is charging around like nothing is wrong! His memory is still amazing and he does his own ward round... he literally remembers every patients name, their parents names, if they have a dog, who is there nurse today etc.  He will walk around and go to one room and you can hear him shouting into the room (he knows he can't go in), 'So-and-so have you had your antibiotic yet?...has Helen your nurse come and done your obs?'.  He also doesn't talk any more - everything is shouted at full volume, so it really does seem crazy he has an issue with his lungs!

Over the weekend Sam and Francis came home each day in between antibiotics.  It was really fabulous to have our regular Sunday pancake breakfast and then head off to church. Sam was so happy to be with both his sisters again and it was the first time in 4 weeks we have all been at home together.  At one point Sam dressed up in his police play outfit to arrest a sister  - the charge was 'having a bad attitude'.  

I brought Sam back in for his 4pm meds and am sleeping over with him.  When Francis stays with Sam they call it 'Bro-time'.  I asked Sam tonight what do we call it when it is Sam and Mummy hanging out?  He looked thoughtful for a second then said, 'Gro-time - Girl and Bro'.  So tonight is Gro Time and tomorrow is day one of Term 3 at school.  Sadly Sam won't be making school.  He has another week of antibiotics so we are hoping that once this wash-out procedure is done we can time his antibiotics so that for the rest of the week we can leave early with Sam and get him to school for most of the day to keep his life normal and so that I can go to work. Clearly if he was too sick to be at school we would keep him here, but the medical teams are happy for this option.

A final shout out to the fabulous play therapists and liver nurse specialists.  These guys are legend, as they think about Sam.... Sam the little 6 year old boy, not Sam the 'insert specific anatomy here'.  Sam will need daily antibiotic nebulisers when we finally head home.  When we were first admitted it required 3 of us restraining him to do this. The play specialists have been involved and now Sam is asking for the nebuliser.... for it is no longer a piece of medical equipment, but when he puts the mask on he magically turns in to a fire breathing dragon and scares everyone that comes into his kingdom!  The change is amazing and I am so grateful for their cleverness and willingness to make his necessary treatment into a game and not a necessary evil.

I leave you with a photo of Sergeant Sam taken before his first arrest of the day!

Tuesday, July 14, 2015

A major speed hump!

Sam's sputum has grown pseudemonas and ecoli - it's in his lungs, which is not good news. It means  yesterday he started a week of strong antibiotics - cephtazidim (IV tds) and amikaycin (IV once day).  He is also having twice daily physio input.  The plan is that he is hit hard by abx for a week (or two if needed) and then will head home with oxygen and a compressor so we can administer daily IV nebulisers for another month!.  This is not great news as Sam hates face masks, let alone one that is hissing and spitting moist steam at him..... but need must go above want, so we are working hard with the team and lots of ideas are flowing - ipad with ear-phones/music etc...

Today Jasmine stayed the day with Sam in hospital - am so proud of big sister offering to hang out with him.  Her verdict on the day, 'boring, not very exciting and Sam was a pain' - sounds like a perfect day in paradise with 2 siblings!

Tomorrow is Francis' birthday so Sam has created a birthday card, which is covered in cars and surprises there!

The above is disappointing, but do-able.  Sam continues to be happy and asks for his daily wheelchair wars with the kids on the ward - they have fun zooming the halls. Courageous little men making lemonade from lemons.

I leave you with a picture of the boy blowing bubbles to try to wash his car - covert chest physio that must be done several times a day to get those lungs clear!  We will work at washing all of Sams cars if it helps!

Sleep well.

Saturday, July 11, 2015

Saturday morning.... nearly home....

So much to update you - I should do it in small bits through out the week, but often I am so tired I just blob hoping I will sleep and catch up on this horrible exhausted feeling..... but last night I slept a whole night - no monitors beeped, no fluids ran out needing replaced (the nurse must have written it on her work sheet!), so with 6 hours sleep under my belt, I am awake enough to write.

The big picture stuff:
Sam admitted with pneumonia.  He required chest xrays, which confirmed he had pneumonia BUT also showed that his central venous catheter (which we use to hook him up every night for his TPN) had migrated into a smaller vein.  This meant it was not usable and needed changing, but couldn't until his breathing was ok to cope with an anaesthetic.  3 days in a row he had peripheral lines put in that were used for a few hours and then tissued. This was tough on Sam and was decided to see how he would cope without IV fluids if we doubled his feeds into his gut by his GJ tube.  So instead of being on 12 hours of 'milk' and pedialyte, he was put on 24 hours of both.  He coped fine with this and that flicked a switch in our heads to get creative with his feeds.  So after discussions with the team and whilst he is in here and can be monitored Sam has had 3 alternate nights with no IV feeds at all, but increased gut feeds and coped fine.  This is HUGE news... this is beyond the realms of possible... this means that Sam will be for the first time in his life NOT dependent on TPN every night.  This means that 3 nights a week we won't have to hook him up to an IV line.... I can barely contain my tears as I write this - this will make such a huge difference to his life and ours.  This will give his liver a break, this will lower risk of infections... the benefits to him will be huge.  

On Tuesday Sam had his CVL rewired.  It took a lot longer than they thought.  They tried going up through his groin/femural artery but both sides are so scarred from previous ops there was no access, so they went in through the neck.  They re-jigged the same line, but as they were transferring him from the operating table to his bed he coughed and moved and his neck wound haemorraghed, so they had to intubate/put him back to sleep and stop the blood flow. So it was around 4 hours from pre-op to post-op and when I went to get him it was the usual 30 minutes of wrestling with him coming off his meds.  They tried different meds this time to see if we can avoid his awfulness post op, but it didn't make any difference.  That night I asked him if he remembered hitting me... he looked at me confused and said, 'but Mummy I love you'.  Thankfully he doesn't remember it.

He was due to have his annual GJ change in a few weeks, so that was done on Thursday to make the most of our time in.  Francis thankfully was with him for that, as I was so tired and not sure I would cope with another wrestling match when I am so physically and mentally tired - Sam is 23 kgs, so when he is aggressive it is a challenge/work out.

I read Jeremiah 32 this morning -  in the midst of people's stubbornness and warnings, there pops up this (v 19 & 20): 'Great are your purposes and mighty are your deeds.  Your eyes are open to the ways of all mankind...'.  This leapt off the page at me - nearly 3 weeks ago we ended up in here and disappointment piled on disappointment as his lungs took a hit, as a random xray showed up something else that we didn't want to know, that his illness slowed down treatment, that problems meant that Sam couldn't get his IV feeds.... they all seemed like problems and disappointments, but when I look back at the big picture, if these obstacles hadn't happened we would not have ever tried Sam without IV feeds and known that he could cope with out them.  I feel so grateful that God sees ALL MANKIND.... all of it is in His hands.  I am so limited by my mind and awareness and lack of intellect and tiredness - He sees me, He sees Sam, He sees the staff here... He see ALL of mankind and his purposes are great.  This has been such a great admission for Sam, for my faith, for hope, for renewed relationships with other parents on the ward.  And yet I don't want to be here.  I want to be home. How much do I miss out on wishing I was in a different situation or space?  How much do I lose out on due to my stubbornness, impatience, trying to control life?
He sleeps so peacefully, always with his hands like this.

'Lord forgive me for thinking I know better than you when it comes to Sam and his care, forgive me for so often wishing I was running someone elses race and not mine.  Thank you that your greatness, purposes and awareness do not fluctuate at all, even when I do.  Thank you for your hope and peace and forgiveness that is new every morning and can not be depleted like my fragile human levels do.'

'Thank you for progress and for this admission, thank you that my girls have had a great week on camp and with friends, thank you that you watch over them too, thank you for Francis that helps keep this all together too and patiently helps me plod on.  Thank you for the many people that have supported us this admission - for Nana that has hung out with Sam in hospital to give me a break, for the ever faithful Ange, for the Cairns family for taking Candace on holiday, for you reading this that care enough to think and pray for us'

Sam still needs a little oxygen at night, so that is keeping us in still.  Last night he was on 1 litre and had a 12 hour oxygen reading test.  Tonight he will have 0.5 l and repeat the test. Then hopefully Monday we can head home, one day short of 3 weeks, having had a bit of an overhaul and with renewed optimism for Sams health and opportunities.

I hope you can see beyond your physical situation and take hope that there is a God of greatness that is aware of it all. X Shirl

Monday, July 6, 2015

Sunday night update

So we both had afternoon Sunday naps today - because we were so tired after Sam woke screaming at 1am with the line in his leg having tissued.  As his central line is waiting to be put back in to the main vein (under GA) he has been using a peripheral line for 24 access for his TPN.  Unfortunately the smaller veins aren't really cut out for TPN and he has been going through one a day.  When they tissue they are incredibly painful and it's also disappointing as it means he needs another line put in.

Last night when he woke he calmed down after about 10 mins with cuddles and after pain relief started to kick in.  At about 2 am a Dr came and tried to put in another line.  It took 2 nurses holding his arm/hand + me restraining him + the Dr trying to put it in.  Sam was not happy and it isn't nice for anyone.  Unfortunately the Dr couldn't get the line in, as his veins are really small/difficult to find and I'm so pleased she decided it wasn't worth trying him again as a pin cushion.  So Sam has been on 24 hour feeds of milk and paedialyte to make sure he gets the right amount of calories and fluid.  All of this is to buy time hoping his lungs will improve enough for a GA. It does mean that his kidneys and gut are working overtime so he needs to have his kidneys drained every 2 hours instead of 4.  The time rolls around very fast and my dreams of lying about reading a book and relaxing have been thwarted by a boy that needs constant care or else play time! His latest game is catching and throwing bee, which he finds hilarious and can last for 30 mins at a time. All good exercise for his upper body and getting his lungs working.  Not so great for me keen to finish my novel!

The good news is that today they weaned him down and he was off oxygen for about 3 hours.  At 2pm when he went back to sleep his lungs also went back to sleep (!) so he needed oxygen again.  He is sleeping now with 1 litre of oxygen, but we are pleased his lungs have definitely improved. The weekend medical team are hoping that he can make a surgical list tomorrow.  I'm not hopeful as nothing has been put in place that would indicate this (no nil by mouth instructions etc), so I'm reckoning on Tuesday at the earliest. Weekends are frustrating as progress as we are in a holding pattern til Monday rolls around.

I leave you with photos of Sam - he looks like such a fraud when he is so happy! The innocence of a child who is just so happy when his blocks fall down..... ah when did I last belly laugh over something so simple?

It is school holidays here in NZ.  Jasmine is off for the week to Camp Raglan Survival Camp - a week of adventure/challenges for 11 - 14 year olds. Candace is on an adventure with her 'adopted' family heading down to Tekapo on a road trip for 2 weeks.  It's so great they both can get away and we are so appreciative of the kindness extended to us which means we can focus on Sam and relax knowing the girls are happy and being kids. 

Nearly 2 weeks into this admission I am getting tired and the busyness of running birthday parties, end of term music performances for the girls on top of sleep deprivation means I am a bit fragile.  Some people comment to me that I should do less - how do you tell your daughter that she can't have her friends around due to her brother being in hospital, or that I haven't got time to make her birthday cake as I'm in hospital?  I don't want her to resent him and I also want her to enjoy her milestones.  I guess it's no different to Mums that stay up to midnight icing birthday cakes - we do it because we love our kids and want them to feel loved and special.  It just takes a bit more planning and time having the kids in 2 different locations and my car looks like a wardrobe.  The other day my friends 15 year old son jumped into my car but I had to move a pair of socks and undies that was sitting on the seat! I had grabbed them from the washing machine on my way to work and was heading straight to Starship after work to sleep the night.... so that was a slightly hilarious/awkward moment, but he took it in his stride as he gets our weird family!

My hopes for this week are that Sam gets his op soon and that the surgeons are able to use the same central line vein and not require more invasive surgery.  I hope that the girls are safe and having special memory moments with their friends.  I hope Francis and I get to see each other and have a proper conversation that involves more than logistics and can enjoy each others company in spite of living in the Starship fish bowl (could be renamed Starfish!) and that I will be able to pause many times each day to remind myself that all of this that seems too big for me is not too big for God who holds us all in the palm of His hands.  I want to be grateful and hopeful, because the alternative isn't very lovely!

I also hope that you reading this have a great week - not maybe in measurable outcomes, but in living life well each day. 

Monday, June 29, 2015

On the improve!

It's Monday night and I am at home with the girls and Francis is doing 'boy time' in Starship. 

Today Sam improved dramatically and is now on 1 litre of oxygen.  He is back on the ward and has had physio input, so he is having to puff and blow on a pipe sitting in water with soap - we call it the car wash and as he keeps blowing the bubbles spout out the top onto his cars.  It tires him out, but it causes him to cough and his chest is clearing.

Unfortunately one of his xrays didn't just show that he had pockets of pneumonia, but that his central line that is embedded in his chest and through which he receives his nutrition has moved!  So instead of it going into his main artery just above his heart it seems to have migrated and is in a smaller vein in the other direction.  It could have been like this for months, but as they know about it the can not use it.  So he has a temporary peripheral line in his arm and he having 24 hour feeds through his arm (can't run it at the higher rate/volume as when in the big artery).  The central line in his chest needs surgery to move it back but they can't do this until his chest is clear.  So it is a bit of a waiting game.

Jas turns 14 on Thursday and she has already figured out that it will be a split birthday, so I will be with Sam tomorrow night so Francis can catch up on sleep and I get to be home Wednesday night so I can wake up and do birthday with my big girl - I gave the girls the choice and there answer involved eye rolling and comments about Dad not doing balloons and glitter and party decor as well as although she is turning 14, still at that age where she wants to do party girl things.  The girls miss Sam hugely and Jas is disappointed Sam and Dad won't be here on Thursday morning.... but it is what it is and the birthday will still happen....

Right, off to make the most of a pump free, nurse free, alarm free, oxygen hissing free sleep!
Next blog I will tell you some of Sams very funny classic comments during this admission and have photos. 

Friday, June 26, 2015

A crazy 24 hrs

I was going to upload photos and write a witty post tonight. Unfortunately I am writing to say that Sa is now in ICU.  2 days ago he started wheezing and had a high temp. At midnight I started having that gut feeling that it was serious and at 1:30 I scraped the ice from the windscreen and we drove to Starship. He had 24 hours with hourly ventolin and a chest xray showed some patches. Sam was happy enough. Today his breathing became even more laboured and at 2pm he started on oxygen/nasal prongs. The physio came and worked with him but still he got worse. A full review was ordered at 10 and we started on back to back nebulisers. Every 15 mins.... After an hr of this he wasnt improving so ICU were called. They reviewed him and Sam is now in ICU. He isnt critical but he needs a higher level of care and is now in the right place if he continues to deteriorate. They have just started him on a magnesium infusion and IV subutimol. He is working hard to breath but is very resistant to interventions and he is just plain exhausted after 48 hrs of broken sleep. As we were transferring down Sam asked me to 'call Daddy to tell him', but at 2:30 am I didnt think that was necessary! However I did think of the people who will be awake right now reading this who could join me in praying for his protection, strength and healing.

I am weary of body but not of heart. This is Sams first admission in 5 months which is amazing. Clearly we wish he was home but I am peaceful he is having the best care he could have right now and am so grateful to the myriad of people working with him.

I have a 30 min window now before they want to attempt changing him to hi-flow oxygen and another nebuliser, so a power nap is in order.