Tuesday, February 9, 2016

Lots of 'NEW'

So 2016 is well and truly here and we feel like we are just catching up with that fact as we had a lot of change.

At the end of last year we moved into a larger rental property and rented out our place =  NEW HOME.  Our home is small and especially so with a stream of miscellaneous medical people around on a regular basis.  It felt like the right time and we needed to consider the girls and their needs more.  It now means Jasmine is under our roof and not in the shed!  This meant Sam and Jasmine had the opportunity to move to NEW SCHOOLS.   Francis also got a NEW JOB, as did I (just a little one, 9 - 12 Tues - Friday) and we bought a NEW (second-hand) CARAVAN (first one was a leaky home!).  So all of the above was quite a juggling act, as there were meetings and countless emails/phone calls just to sort out Sam moving school/care options etc.  I am pleased to say that he is now in week 2 of his new school year and totally loves it and has fitted in so well.  This is not just due to the hard work of so many people at the school, but of course because his faithful carer of 6 years was kind enough to toddle off to the new school with him - Ange is truly gold!

With the end of year busy and the added busy of the list above, I crashed and haven't yet got back to full capacity.  Chest infections, Strep throat etc, and 3 lots of antibiotics and 6 weeks later and I think I'm nearly better.  The frustrating thing is I was nearly better a few times and then Sam would have a really bad night (UTI), then we'd have a hospital admission for 24/48 hours and with no reserves on top of poor sleep I would slip back.

So this weekend coming up I am staying here at home to sleep and rest whilst Francis takes the kids away for the weekend... and then next weekend I am heading off to Napier to stay with my sister Elaine and experience Art Deco weekend and also have whole nights sleeps without pumps, leaking drains or vomitting to wake up for!  2 weekends in a row with sleep - can't wait!!  Francis is amazing and always helps so much, but he seems to cope better with broken sleep than me. 

Anyway, enough boring... on to Sam!

Sam has had a fabulous summer!  He has camped in our caravan and had his first Kayak experience, first music festival (Festival One) and lots of lovely play time in the caravan and with friends. 

 Dad and Jasmine taking Sam on an adventure

Chilling on a wet day in the caravan - no TV, no DVDs, no technology...... ah... bliss
 Possibly a tad too loud, but he loved the social aspect of 3 days with people!
Sams buddy Liam won a photo competition with Sam as his 'model'.  It's such a great photo of Sam being contemplative (um, he was bribed with a new matchbox car if he sat there!)
Rocking the new school uniform - Mellons Bay School.

We are back into appointments and plans for his nutrition and care.  He continues to get UTI's and he has had some hospitalisations and meds at home, but we are working on mechanically emptying his kidney and bladder using different techniques, to help us get the residue urine out, as any left in is a source of infection.  Warmth + moisture = bacteria.

We saw the Urologist last week and it was a positive appointment.  Ultrasound scans taken when Sam was an inpatient 2 weeks ago, plus the results of a blood test and special nuclear testing in December show that his kidneys are coping remarkably well, considering they are infected so frequently and then have to cope with strong drugs.  He explained that scar tissue can be a result of infection on an immature kidney, but these risks reduce after about the age of 7 or 8.  Sam is 7 in June, so although he isn't in the clear yet, everyone was optimistic and delighted in the state of his kidneys with all the other factors involved.

Sam is now on the 20 percentile for height for his age, but has been dropping the weight and is down to 20 kgs.  We are working on trying to increase the calories in his enteral feeds, to see if we can fatten him up a bit.  This is preferable to having to increase his TPN again.

He shows signs of interest in food and positive peer pressure is such a big factor in his normal development.  His little buddy Liam (photographer extraordinaire), had him licking lollipops and kissing melon with no questions asked.... so we continue to try to encourage him with food.... but as with my other kids, he'd rather take advice from a peer than from his dinosaur outdated mother!

So I feel like we are back on the rat-race of hospital/school/deliveries etc... except we never got off and had a break.  But that's the thing with a chronic condition, there is no break - no break for the diabetic or the epileptic or the stroke victim.... life is what it is and we have to wake each day and decide how we respond to the challenge of that.  I have to confess with illness piled on top of exhaustion I didn't responded well.  

At Festival One I went to a seminar given by an inspiring man who has Cerebral Palsy (whose name escapes me right now).  He has a PhD in Theology and lectures at university level.  Listening to him from his wheelchair, constrained physically by his body, his heart and soul was ever so alive.  He was vibrant, yet real in the struggles.  He was optimistic and hopeful as He had found the reality of faith in Jesus the source of his strength to keep going each day, inspite of physical pain and trials. He was such a source of encouragement to me. May you have people around you wherever you are that can encourage you today.

I hope to be more regular with the blog... sorry, it has definitely slipped!  And I think a regular photo or two of Sam is a dose of good medicine too. 

X Shirl

Watch this space....

Phewf, what a crazy 2 months it has been.... this is just to let you know that tonight once my little cherubs are fast asleep I will update Sams blog!  Finally!

See you soon x

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