Monday, June 19, 2017

8 years old and many adventures!

YES, the last month has been busy... and it included a birthday!  It was a very low key birthday, due to me being a tad tired after a whirlwind 3 day trip to see family in Southland.  We managed balloons for our standard 'birthday breakfast', but cake waited til the next day - once I had been to the supermarket. Normally I spend hours on creating a cake and fun things... well I was just straight up honest this year, and happy to accept that 'Super Mum' was never real anyway, she is long dead and gone..... so I think it literally took 34 seconds to create Sams cake!  I had splurged on 2 x $4.99 cakes from Pak'n'Save, opened them up, stuck a cookie cutter in the middle and popped out the 2 centres (which became part of the girls lunch!), sliced out a chunk of one so it would fit together and voila!  Sam seemed ok with it, and it was suitably adorned with a candle gifted by cousin Grace!  Less is more right?



Sam has had many 'firsts' this past month. He has been on the Howick Coastguard Boat (courtesy of a friend), his first flight (2nd, 3rd and 4th!), first time ice skating (he was more 'ice sitting!), first time as a Fire Man (Thanks Uncle Ron!)  







Flight Treats!



Sam has mostly been really well.  I had booked flights to take the 3 kids down to see my family (Invercargill) for a 4 day long weekend.  I had talked to the airline, had letters from Drs etc, and done due diligence to make sure that if Sam was to get sick whilst down south, a plan was in place.  All was on track until 3am the night before we were due to fly out.  Sam wakes up and has a temperature of 39.5!   I was gutted.  As Sam has surgically implanted lines in him, any significant temperature is a concern and I couldn't ignore it (but I really was tempted to!).  I head into Middlemore first thing in the morning and he still has a high temp. Chest xray, bloods, urine samples -everything is reviewed, but no source of infection is found.  At this point I am having to decide whether to risk taking Sam down south, also with the unknown factor of flying in a pressurised cabin at 35,000 feet with compromised lungs and gastro issues, or if it is a normal virus which will run its course.  I am praying and pleading with God to please let Sam be well enough so we can go on holiday. I had texted all and sundry and they were praying too! Historically when Sam has a big temp at this time of year, he has been brewing a cold/infection which often ends up in his lungs and complications occur. I was very conscious of this, but felt peaceful that this time was different. I negotiated with the Dr, (who was hesitant to let us fly), that if we pushed back our flights by 6 hours and if Sam didn't have another big temp between now and then PLUS having a review in the morning, we could still go. After a long day in hospital we got home about 5 and I change the flights to a later one (note to self, never book the cheap flights as you end up paying a fortune to change them - false economy, book the expensive flexi seats first time and hopefully that will pay off in the long run!). Sam had a good night, a good review and off we set for the airport.  Queue hurdle after hurdle after hurdle....then missed flight.... then sobbing mess of a mother with 3 confused kids.... then airline person with heart of stone.... more sobbing and begging..... then lovely airline manager filled with kindness..... queue last 4 seats on last flight of the day!  It was the most bizarre of days - understaffed shuttle company meant we waited 30 mins rather than 10, then broken down traffic lights stuck on red etc etc....... when we finally got on the plane I collapsed in the seat so relieved.  Now remember this is Sams first time on an aeroplane and he is a little anxious.  As we flopped in our seats all I can hear is dogs barking - like quite loudly! I have literally flown all around the world and been on dozens of flights - I worked for 4 years for a UK based travel company and was on planes so frequently and I have never heard dogs barking!  Sam is ... um.... quite terrified of dogs! He is looking at me saying, 'Mum are there dogs on the plane?'.  I could see him thinking am I going to be shut inside this little flying box with dogs?!  Jaz and I are confused by the dogs and then we realise they are right under us in the hold.  Thankfully once we took off they stopped barking and Sam enjoyed his flight. At the baggage claim in Queenstown there were several people relocating for ski season, claiming their dogs. This meant nothing to Sam who clung to me as they were wheeled past him barking!  Then to find our rental car (Candace and I did our best impersonation of 'The Amazing Race' as we had to jog 10 mins in the dark to the rental car park as it was now 'out-of-hours').  2 hours later we pulled up to Mums place and we could now sit and laugh at the crazy day we had just had as we ate our swede, mash and meatballs - aahhh so good to be home!

Travelling with Sam was interesting.  Everything he needed for the trip had to be taken on as hand luggage - we each had 7kgs and all 4 of us had Sams stuff! No airline will guarantee 100% that checked luggage will arrive, so his pumps and stands, all feeds, giving sets, syringes, meds, drains etc, all were packed and repacked and weighed and shared amongst our 4 bags.  The trip was nearly a day shorter due to Sams episode the day before, but thankfully it seemed to be viral and there were no emergencies whilst down south. It was great to spend time with Mum, Siblings, spouses and their kids, Aunties, Uncles and friends.  Sam had never met some of his cousins, but you wouldn't have known that from the interactions. Thankfully the trip back was hassle free and we could enjoy the drive to Queenstown in daylight. 

The day we returned Sam was sniffly and snotty.  This then turned into chesty - not a good thing for him as his lungs are quite damaged.  Thankfully it seems his chest physio work has paid off, as he has been managing to clear it and keep up his energy.  He is now on antibiotics for his chest and he missed 2 days of school last week due to this, but he will be at school tomorrow and is doing really well.

Last week we had a gastro clinic and a dental clinic - both at Starship.  We are playing with his feeds again to try and increase his calories so we can decrease the hours on pumps.  We are now on 65% on Nutrini High Energy Multifibre and 35% peptijunior.  We are to see how he goes for a 7 day period and may titrate it up by 5% if he copes with this.

This coming week Sam has another Psychiatric assessment (cognitive development) on Wednesday at Super Clinic, so he will miss a couple of hours of school for this. It will be good to get the findings of these assessments to see what his baseline is with different functions.

Sam is definitely an 8 year old boy - wants to wrestle, shoot, tackle, jump, attack.  It's very delightful to see his enthusiasm for life and also the difference between girls and boys. Candace asked me the other day, 'Mum was I like Sam, did I always want to wrestle?'. I told her she didn't want to and she asked when he would grow out of it - so the girls are learning what boys are like and having to adjust to the noise of a busy loud brother! Today the girls were so sweet as Sam returned home after a weekend with his Dad. They each sat and cuddled Sam and Sam told them all about his fun weekend. It was lovely to see that they miss each other and were excited to ask each other what they had been up to and to share in each others fun ... I enjoyed it whilst it lasted .... 

Blogging is hard at the moment, as it is hard to separate the issues around solo parenting Sam and Sams well being and the new family dynamic.  I think that is why it has been easier to just not.  The stress and emotions around missing the flight were many and varied - 'Can I even do this solo parenting?', so much planning and prep for Sam and then it maybe being for nothing, 'why does it seem that sometimes everything is against us?', 'So wanted to see family and spend time with them'.... Yesterday I was at a day conference at a local church and we were reading about a lady in the bible called Hagar - she was from a despised people group, unmarried, a slave, pregnant, mistreated by her boss and life was so hard she ran away and the story picks up as she is weeping alone and dejected in the desert.  An angel comes to her and talks to her. The first time in the bible when an angel meets with a person is this time - and they have a chat and she names the place where she is 'God Sees'.  I love that a dejected unwanted pregnant scared despised young woman is visited by heaven - God sees, God understands and God gives her a promise of hope, gives her instructions and help.  In our age of instagram and selfies, we so often want things to instantly be better like that person over there with the FB posts that show their smiling happy holidaying family!  I am confident that God sees each and everyone of us, our challenges, our pains and joys, our true heart.... and he cares deeply.  I am learning so much and so grateful for that.  Learning means we are growing and we are alive.  I am learning to enjoy the kids. I am learning to not rush - to enjoy each hook up of Sams feeds, each drain I get to do, as that is time with him.  I used to see his cares as tasks to be completed so I could get on to real things.... how wrong I was. His cares are the real things as I interact and care for him. I am learning to not care about some things as they don't actually matter and to care about other things that really do matter,

I was telling a friend about our tough day getting to the airport and she commented on how amazing my girls were at coping with this.  I was so proud of how great they coped and how helpful they were and she commented that this was their character having been forged due to the past 8 years of dealing with the upheaval of Sam.  It rang true - hard things are actually a gift, we would just rather hand them back and ask for a nice lovely easy gift, but hard gifts create special opportunities for growth.

I hope whatever you face this week, you can be aware that you are not alone, there is a God who sees, who knows, who cares.  I hope you can accept whatever present you have and not be tempted to throw it back or pretend it isn't really what it is, but find the opportunities that are in it.

Sleep well!

Friday, May 12, 2017

Hooray for POOP!

πŸ’©πŸ’©πŸ’©On Sunday night I changed Sams feeding regime, as per the staggered plan created by the Starship dietician.  He has been on the same 60%:40% combo of 2 feeds for 2 weeks so it was time to change it up to 80%:20%.  Sadly Sams intestines did what it did last time and slowed down significantly.  On Monday he was a bit rounder and outputs had thickened/slowed.  On Monday night the night sleeper ended up turning the mix down as he was waking to be sick and complaining of pain. Tuesday he was rounder still.  Tuesday and Wednesday nights got progressively worse with pain and 'Michelin Man' was coming to mind. Last night at about 1am, I made the decision to stop all calorie feeds and just pump him full of electrolytes (to keep his fluids up) and that I would take him to hospital first thing in the morning.

At 7 am I emailed both Starship and Middlemore as I wasn't actually sure where I should go.  7.25 am the nurse specialist called and we had a chat and I made the call to go to Middlemore, as Sam had been seen at a clinic there on Tuesday, so the comparison and familiarity would be useful.... plus Starship was full and we would end up sitting in the emergency department for endless hours (think windowless bunker).  I sorted the girls off to school and gave them various scenarios as to what to do if Sam was to be admitted.... thankfully we only had to get to Plan B for one child and Plan A worked a treat for the other!  After packing up, sorting up we got to Middlemore about 10am.  This was precisely around 30 mins after Sams outputs had decided to ramp up! So I emptied his poop bag of thick goopey poop 3 times in an hour - I was SO happy, although I felt like such a fraud and promptly burst in to tears on the poor Reg that came in.... I did explain that 2 nights of very broken sleep was a large part of the tears, but once I sorted myself out we hatched a plan to hook Sam up to feeds in hospital and see if the blockage had truly gone.  I think also as a Mum it's just hard watching your kids in pain....and I knew where this ended up last time and so didn't want that - so they were tears of relief! They think that the extra fluids had just helped unblock the blockage, and 48 hours worth of poop thankfully arrived - better late than never right!  Suffice to say that various people received the 'pile of poo' emoji in texts! πŸ’©πŸ’©πŸ’©πŸ’©πŸ’©

It was lovely to see Sam pain free and back to his usual self and it was a win to get home just in time to pick up the girls after school.

On Monday I had a school meeting about Sams progress at school.  This meeting had numerous people around the table - OT, Physio, SENCO, RTLB, LA, SNC and Teacher - LOL to all those education acronyms!  A bunch of kind, skilled individuals all discussing Sams progress, points of concern and how to help him make the most out of his learning and time at school.  I always come away from those meetings with mixed feelings.  I feel sad for him as I hear what he needs help with and see the huge gaps between him and his peers in some areas... but it's so moving hearing them all discussing Sam and seeing their genuine care for him and seeing how far he has come!   It was agreed at the meeting it would be good to get a cognitive base line to help everyone know his strengths and weaknesses and how to approach that.   So he is now booked in for a WHISK test (another acronym I have no clue what it means) which I think is basically an IQ test.  This is taking place on Wed 24 May.

Tuesday I had Sam at Middlemore for his Paediatric review. He is weighing in at 22.8 kg and 114 cm - which has him on the first percentile on the growth height chart.  In the afternoon I took Sam to Gravity.  Upon chatting to my dear friend a few weeks back, it dawned on me that Sams time is taken up with so many clinics that I don't actually do anything that fun with him!  Gravity is a trampoline park and they have a $10 Tuesday and I figured jumping around for an hour would be great for his core, his lungs and coordination.  I tried not to think of potential broken limbs, such as his sister endured on a trampoline, but that the benefits and fun factor could be very cool.  It was a fun time and he loved it!



On the way home Candace was quiet and I asked her what was up.  She said, 'Don't you feel sad when you see all that Sam can't do - he couldn't jump and do what all the boys his age are doing'. It was a very sweet comment as her caring heart for her brother came out and I realised I was speaking to myself as I said, 'Yes, I do feel sad for him so often, but when you have been told your child will probably not survive labour, when you're told he probably wont ever walk etc, etc, ... how amazing is it to see him running around on trampolines!'. It was a good lesson for the both of us about how perspective and what we decide to listen to impacts our every day.  We talked about how it is so important to acknowledge the emotions of pain/sadness/disappointment etc as they are totally valid, but if we allowed ourselves to dwell on those thoughts of sadness the joy of the past hour of seeing him laughing and enjoying it (albeit in what looked like a limited way) would be stolen. We talked through the bible verse, 'Be transformed by the renewing of your mind' and how it was our choice what we thought about and how our thoughts are so powerful as they turn into actions. She perked up as we talked and laughed with Sam and talked about all the cool things he loves doing - he listed off 'Going down the slide at school, the trampolines, wrestling with Mum (it is a daily activity in our house and I apologise in advance if you happen to pop in when a session is in mid flow, as Sam doesn't see anything is an excuse to stop!),'.  Below is a photo of the two of them the next evening (just be grateful there are no wrestling photos):


So I leave you with some great quotes that I heard this week - I hope they help you to see a bigger perspective and to find things to be thankful of in the midst of what ever storm you are weathering.  I like these quotes because they don't pretend all is perfect, but they give us courage and hope in the midst of hard:

'Contentment is the greatest form of wealth'

'True wealth is measured not by quantity but by the quality of calm amidst the storm' (I was a millionaire today!)

'To be content is to be ok with what I don't have'

'Comparison is the thief of joy'

Goodnight 

X S

Monday, May 1, 2017

Not all challenges are medical

I've lost my mojo with the blog.  I've always maintained I wanted to portray Sam holistically as a normal little boy with delight in cars, has fun with his siblings, is social and fun.... and he happens to have some medical stuff going on..  I've been struggling because to be truly honest about his well being now is quite sad to write about - he is doing quite well with living with chronic health conditions, but it is the chronic sadness in his heart, which is affecting his behaviour/speech and outlook that is so very painful to watch.  Sam is deeply loved by both his Mum and his Dad, it's just that his Dad doesn't live in the same house anymore.  Sam doesn't understand this and his pain is palpable.  Sam adores his Dad and they see each other regularly and whenever they can, but it doesn't make sense to Sam and every day he is upset. This impacts my every medical interaction with him as it now takes longer to do his cares as he is challenging me at every turn.  Sam has become verbally and physically abusive at times - It is upsetting, but I know it is just him trying to make sense of it all.  I just hug him tight and tell him I love him and nothing he can say or do will make me ever leave - I'm here for ever!  

Last week he met with a child psychologist and it was really amazing to watch her connect with him and get him talking about his 'big feelings' and that it was okay to be angry and sad.  I am so conscious that humans are not separate compartments and that physical health is affected by our mental and emotional state and vice versa.  

He is a kind sweet boy and today his sisters were very sad about some 'stuff', so he sat down and wrote them a note.... so cute to see him doing this for them. He walked in to Jasmine's room and kissed her sleeping cheek and gave her her note - ahhh, it makes up for all the sibling fights!  See if you can read the note - so adorable!



It has been school holidays here, so one day we parked the car at a local train station, went on a train trip in to the city, then jumped on a boat!  Sam loved his day out experiencing transport that wasn't cars! On the way back he was sharing earbuds with his sister (listening to the sound track off 'Sing') when a commuter sat next to him - it was very funny to see his face as he squished over nearer to us for safety!

You may remember about 2 months ago there was a medical incident where Sam was given a very strong drug at the wrong time - several hours too early.  Sam had to have extra renal function tests and 3 weeks ago he had an audiology review.  Sadly it seems that he has hearing loss in his right ear with higher frequency waves.  This is disappointing, yet not surprising.  Sam will now have 6 monthly hearing tests and an ACC claim has been put in as it could be he requires a hearing aid in the future due to this injury. It saddens me that he was harmed - it was avoidable at several stages, but it still occurred.  I have worked hard over the years to try to improve patient safety and I will continue to. Here he is having his hearing tests.  He was so good at concentrating for around 45 mins. 

Over the years Sam has had some amazing people in his life. One of these has been Leigh - she started as an overnight watch about 5 years ago when she was a 3rd year nursing student.  She would come to our house twice a week so we could sleep and she would be in with him.  In recent years she would give us respite and hang out at home in her new role as RN.  The girls just loved having her around as did Sam and she has become a very special part of our family.  Last week we had a fun filled 'last supper' with her before she flew the coop to Australia.... life is so enriched when we do life together!


Tomorrow is Sams first day back at school after the 2 week break. He is looking forward to seeing all his friends again ... and of course seeing Ange again (his trusty carer).  This week Sam has just one visit to hospital on Wednesday.  Last week Sam had a chest xray, just to compare with previous images and to see how he is doing.....the images show his lungs are quite mucky so need to make sure we are doing twice daily chest physio.... as well as his leg physio to try to help his gait/hip alignment. 

Feeds have been increased now to higher proportion of the multi-fibre higher energy feed, so he is now back down to 12 hours - it is so much easier having him hooked up for less time.  And this time the output has not slowed/thickened to point of crises like it did at the end of last year, so we are hopeful to continue changing up the feeds in the next week. 

So Sams life is just like yours and mine - a combo of mental, emotional, physical and spiritual challenges.  With Easter having just passed, I read an inspiring book about the life of Mary - the mother of Jesus.  An angel told her she would have a baby who would be the Saviour of the world... and she would be called blessed'.  The book looks deeply at our concept of 'blessed' - so often we think of comfort, wealth, abundance, good health etc.'.  I wonder how blessed Mary felt sitting in the dark at the foot of the cross her precious 33 year old son was hanging dead on?  Yet in the darkness God was doing his greatest act - across town the veil that separated God from mankind was being ripped from top to bottom so that anyone could now be in Gods presence - not just a privileged religious few. In the greatest darkness the greatest act of love and hope and reconciliation was taking place.  I find it fascinating that a 33 year old man that lived so long ago is still at the crux of history and debate..... Every night I read Sam a bible story and pray with him before he goes to sleep. Today we read a compilation of bible verses, 'God cares about every detail of our life, He collects ever tear, he knows every hair on your head (a quick count for some!), He knows all we are going through, He loves you and cares for you' . That knowledge fills me with hope and joy as I look to the week ahead, knowing that God sees every time I hook Sam up, drain a kidney or hug him through his tantrum and heart pain.   I can confidently walk knowing God is present and working, even in the darkness and unknown of life. 

Sleep well X

Sunday, April 2, 2017

Some humourous musings ahead....

First up, sorry for the long silence.... and for all those wondering if Sam needs his legs broken and re-set.... thankfully the answer is NO!  The CT Scan came back with nothing of concern re his bones, just a muscle issue, which the physio is already drafting up new exercises as we speak!  It all sounds so easy, but even fitting in his twice daily chest physio amongst normal family life is a challenge sometimes.

Sam and the school Year 3 group went on a school trip to a local venue and took part in all manner of team building exercises.  I went to help and it was an eyeopener.   Having watched Sam at play I would have to say he works best solo!  The photo below makes me laugh every time - the whole team is doing the right thing and Sam decides what he wants to do!




Tomorrow I need to call a lady I met at church today to apologise for my nuttiness!  There were about 10 kids in Sams group all making crosses out of coloured jellybeans.  Imagine lots of noise and hands in the lolly jar etc. At the end a Mum came up to me and said, 'I saw Sam lick a jellybean and put it back in the jar'.  I was so surprised that he had that my response must have seemed so weird without knowledge of Sams uniqueness! I said, 'Oh are you serious?  Did you see him do that?'  She said 'Yes I definitely saw him lick it and put it back'.  At this point I replied, 'Wow, that is SO cool... I am so proud of him - that is awesome'.  I turned to Sam and said, 'Well done for licking the jellybean buddy - great work'.  At this point another group called for my help and I wandered off, but I did note the Mum was staring oddly at me.  I  was telling Candace about it on the way home and her look of horror and gasps of 'Mum that is so grosse', helped the penny drop that the woman was letting me in on inappropriate behaviour that I may need to address... instead I was commending the boy for trying food (if jellybean is found in a food group?).

The week ahead is busy for Sam and clinics. 
Monday:  Gastro Clinic at Starship,09.30am
Wed:  Clinical Pysch nurse at Starship 12.30 - 1.15
           School - meet the teacher 2:15
Thurs:  Sam has a half day at school,afternoon he has a special surprise friend coming to see him
Fri:  Audio tests Middlemore Hospital 08.30

I forgot that last week Sam brewed another UTII - he came home from school early on Monday and Tuesday I dropped in a sample at the Manukau Super Clinic.  I have done this many many times over the years with zero issue.  Well it seems that the week before there had been a change in systems and they would no longer accept any samples without thei letterhead.  I had been using a generic hospital/starship lab form, but now I needed a CMDHB lab form.  I understood their reasoning, but I understand their reasoning.....but I managed to convince to let them accept this one last sample with promises of me going to get the approved lab forms from now on.  I pretty much grovelled and begged - it worked!  So Sam came back with another uti.  I had emailed his Paediatrician about Sams unwellness and an out-of-office emal bounced back as he was in Australia.  That evening I was at netball to pick up Candace at 7pm and I get a call from the Paediatrician - seriously how good/kind/amazing is that - he called me from Australia with a plan!  It was very very appreciated.  As it was out of hours, the plan required going to Middlemore to get the prescription from a Dr that said Aussie roaming Paediatrician had contacted.  Then a trip to the out of hours pharmacy. I was so very grateful for the attention to detail from the Paediatrician and his team and to Francis for doing the night run to get the script and drugs. around 9:45pm Francis arrive with the drugs, so Sam could take his first dose promptly. It was truly a team effort and the uti seems to be clearing and Sam is well and happy.

Thanks one and all. XX



Saturday, March 18, 2017

CT Scan

Yesterday Sam was a superstar!  He had a CT Scan appointment at Middlemore Hospital - the orthopaedic Dr had ordered it, as they want to see if his unusual gait/poor hip rotation is due to a bone anomaly or if it is a soft tissue issue. The Dr told me that if it is a soft tissue issue, rigorous and ongoing physio work can help with that.  I dared to ask what was the plan if it showed that it wasn't a soft tissue issue?  At this point I think it's fair to let you in on a hospital joke that is whispered along the corridors by parents and medics alike.  I was never good at jokes and I forget most of it, but the punchline was along the lines of 'Surgeons and Anaethetists relate best to unconscious people'.  So with that in mind, I will tell you his response to my question.  Without changing his manner, tone of voice etc he said in a very steady calm voice, 'oh it's a relatively easy fix,, we just break both femurs, insert metal rods.......' and I didn't actually hear the rest as I was so aghast at the statement he had casually deposited in my lap!  I think I muttered something about let's just hope it's soft tissue then and not make any plans until we see what the CT Scan reveals.

So yesterday Sam and I went in to the room with the giant donut - Sam was very verbal in the fact that he was scared.  It is a big machine and also in a room that is very 'hospital'.  I told him 2 things - that Uncle Pete can do this kind of thing and he would be so proud of Sam if he could do it too and we could call him after the scan and they could compare notes!  This settled him and he allowed the guy to tape his feet and legs together.  Then they lay the blanket over him and with giant velcro straps they tied him to the bed.  This was another point he was screaming and scared and I went delivered  my second statement/blackmail here -  'if you are really good and lie still we will go to the shop on the way home and you can buy a new car!  Well that worked a treat.  I stayed in the room with him and he had a few verbal wobbles as the machine started whirring and then again as the bed moved in and out of the donut... but mostly he was absolutely brilliant. Trusty Bee was at his side and I chatted and sang to him the whole time.  7 minutes he lay perfectly still - I was so impressed with him.  This was the first time he has done something like this without anaestetic.  As soon as it was over he was of course reminding me of my 2 promises and I think he reminded me about 32 times between the end of the scan and actually stopping at the shop to buy the car.  My memory is getting bad as I get older, but Sam was taking no chances!



On Wednesday we were in Starship for an hour with a child psychologist.  He will be having 5 sessions over the next 5 weeks for 1 hour at a time.  He has one-on-one with his new friend and they play and chat and she assesses how he is doing.  This programme is often done with children at this age who have lived with chronic health issues. Sam has been vocalising more and more how he wants to 'rip out my tubes' and 'he hates his mitrofonoff' etc.  So it will be good to hear her feedback after the sessions to see what we can do to help him cope with his challenges.  As always the physical challenges are significant, but things of the heart are harder to quantify and treat and definitely more significant and impacting on his life at his age/stage.

Hsi UTI  has cleared (yay!), but he is sounding a bit chesty and sneezing a bit, so am making sure we are doing his chest physio twice a day and keeping a tabs on what bugs are at school.

I leave you with a photo of him with his new AA membership card - he was telling his Aunty Elaine all about it,.... if only she could have seen down the phone! I know there is skype, but we were just using a landline phone - gosh, feels very last century.....




Thanks for keeping in touch with the little man!
Shirl

Monday, March 6, 2017

It has been a better week!

Sam has been at school and the uti has cleared up - he has been off meds for a week.  Today he is complaining a little of pain in the groin area and been requesting more bladder washouts, so I am hoping and praying we can keep bugs at bay.  Every 2 weeks I alternate medicines to hopefully trick the bacteria - for 2 weeks Sam takes a drug that makes his urine more alkaline and then the next 2 weeks it's something to make the urine more acidic - the verdict is out if it actually works, but we are up for anything if it means he has less infections.  It does mean that I have to find the medicine grinder and grind a med up and I can't find it right now... a rummage in the medicine cabinet is about to ensue!

This week Sam has two hospital appointments.  The first is tomorrow at 2.30 pm with the orthopaedic team.  He hasn't been on their radar before, but we have been referred as Sam has quite a wide gait and his hip movement is quite limited.  This is exploratory to see if there is something that could be tweaked to improve his movement and to see if there is actually some physiological issue that could be corrected.  This clinic is at Super Clinic in Manukau - not Starship.  I like going to this clinic as there are masses of free car parks and I don't have to fight with city traffic.

On Wednesday Ange, Sam and I will venture to Middlemore Hospital to take a tour of the children's wards.  This hospital is in our catchment area (around 25 mins drive away) but we have never been admitted here.  Should Sam have a simple medical need (hmmm, that would be lovely, but I'm not convinced this plan is going to be in Sams best clinical interest), he is to be admitted here first.  So this visit is to familiarise ourselves with the ward, meet the staff and have a chat re his specific needs, meet the play specialist and other medical people so that Sam can be relaxed and familiar should an admission happen.  I think it's an appropriate move, and as NZ has a free health system (which I'm so grateful for), it doesn't mean we have much say in treatment, or the luxury of choice.  I am thankful for common sense kind practitioners who are open to discussing the finer points of having Sams care across two hospitals and Health Boards.... let's say the discussions are robust and lively between us all and this 'Mumma Bear' is not going to let her cub out into the unknown with out a systems check etc.

Sam and I share a really massive room - it's quite long and would probably have been the lounge in the original house.  He is at one end with his pumps and stacks of medical gear, and I am in the other end with french doors/dividers in between.  It works well as I am far enough away from him that I don't hear the whirring of the pumps, but close enough for when he shouts out needing attention in the night.  Last night he woke me 3 times (about the norm).  Once to say his ilieostomy bag was full and could I empty it, once to say something had leaked and could I sort it (a feeding tube had leaked) and the final time was just to tell me he loved me!  It was so cute....'Mum, Mum, ..... wake up....', 'hmmm, yeah, what is it.....', 'Mum...... I really love you'.... and then he went back to sleep!  I need to work on appropriate timing for him, but it is lovely to hear it even if at 4 in the morning!

A very exciting development is happening on Thursday night - my new 'Night Watch' is starting. Sam has been re-assessed and he has been given funding for 1 night a week to have someone be with him overnight.  This angelic being (anyone that gives me sleep automatically jumps to Angelic Status!) will rock up Thursday around 10 pm and will be in with Sam til 6am.   This angel will deal to Sams pumps/feeds/meds/every whim and I shall sleep on the couch in the lounge and hopefully ignore them both!.  I am very grateful to have found a lovely local third year nursing student, whom Sam already knows and is comfortable with.  So look out Fridays -like an aging old caterpillar I may stumble out of my cocoon having had some beauty sleep.  I doubt I will look any different, but the view of the world is definitely better with uninterrupted sleep mixed in!

X


Thursday, February 23, 2017

What a week!

If you asked me last Friday to describe what I wanted my week ahead to look like, it wouldn't have been the week that turned up!

Tonight I tucked Sam in, and cut off his third Starship wrist band for the week.  Monday it was Surgical Ward (24b), yesterday was CED (too bizarre a story, I don't have the desire or energy to revisit it but thanks to Tania for jumping in to rescue us!) and today was 26b!

Bur firstly, a touch of lovely. A dash of uncalled for kindness.  A pinch of humans doing what they could for other humans.  You see, living with chronic health means that 24/7 health is an issue.  There is not a day, nor moments in the day where Sam isn't limited or aware of his health.  Today was no exception, except that he had a lovely distraction, a momentary interlude from it.

Last month our local paper featured a front page spread about how Mazda Foundation had funded Sam to the value of an ipadPro, to help limit interruptions to Sams schooling due to hospital interruptions.  The comment was made how much Sam loved cars and he dreamed of one day being an AA mechanic.  A person read that article that works for the AA and he took his thought up the chain to management and organised for an AA visit to school for Sam and his friends.  After many calls and Sams nearly exploding excitement, today finally arrived.

The AA were booked for 11:30am.  At 11:10 Sams carer calls me - I can barely hear her above Sams screams in the background.  I manage to make out there had been a serious mis-hap and Sams GJ tube was broken.  I was at school by 11:15 and could hear Sam from several classrooms away! Fortunately the hysteria was not due to pain, but due to him figuring out he may not get to see the AA..... as he has talked of nothing but that for past 3 weeks!

A quick call to Starship and it is decided if I can plug the hole/create some temporary measure we would try to keep him at school.  Basically the end of the attachment had snapped off, so you couldn't close it, which meant as there was no resistance, his stomach was emptying.... just pouring out and he was soaked.  So Ange and I lept into action.  We chopped 2 fingers off hospital gloves and stuck them around the hole, taped them on and repeated.  Then we got a very large pile of gauze and tape and bandaged him up.  Sam had calmed down once he realised he wasn't going to miss out!  Thankfully the bodge job held up for the required 30 mins or so!

I'm not sure if it's cool to stick up photos of his class for privacy reasons, but I will pop up one that shows the fabulous AA team that came. Mike and Chris were so great with the kids and they were assisted by Mehpara (who made it all happen).  They did a little talk, presented all the kids with a driving pack (pencils and colouring in travel adventure).  Sam was presented with an AA badge, a car speaker, a battery pack (for iPad) as AA do batteries, an AA umbrella, a ferrari mouse mat and a youth membership pack - so I can go on line and he can become (probably one of the countries youngest) bonafide AA member!

After this the kids were able to explore the AA truck and another older vehicle (which had very cool horn sounds - even included a chicken!).  It was a delight to see the kids having fun.


In this photo Sam is holding his tool kit and wearing his AA gear - the toolkit even has baby sized jump leads and all sorts of tools.  He loved showing it to the AA men! Mike is holding up Sams AA Membership pack.

And then we headed into Starship for 2pm.  2.30 he was under sedation and 3pm we were in radiology. Sadly it took over an hour to change the tube, as it is fiddly.  Sam was awake, but medaz makes him a 'happy drunk' - entertaining in itself.  Thankfully he wont remember the death threats and abuse he hurled at us all - and I'm not even joking! If both my hands weren't used to restrain him, whilst sweating in hot yellow plastic hospital gowns, I would have recorded it!  

We got home tonight around 8 and he is happily asleep thinking of wheels and yellow and white striped vehicles filled with kind mechanics (or that's what I imagine).  Sams final words tonight were, 'I don't think I can sleep - I'm not tired, I need to think about the great AA day!'. 

Sams bedtime comment made me smile..... Today he also had a GJ tube snap, been soaked in bodily fluids and cried as I stripped his soggy clothes off him, been anxious about going into hospital, fought with me and a nurse as we wheeled him into radiology, lay pinned to a hospital bed and been restrained by 3 people for over an hour while a radiologist manipulated a wire in his tummy and sat hooked up to an IV infusion..... BUT the kindness and generosity of the AA, made possible by someone giving up a bit of their time to do what they could to bring joy to a stranger (Sam) is what Sam remembered as he fell asleep.  The rest of the tough stuff still happened, but today he was just a little boy having fun and he got some respite from his health- and that is respite for a Mums heart.

The AA's actions meant so much and it challenges me, because all around me are neighbours, people living with 'chronic'. Maybe it's sadness or depression, financial woes, a bereaved person struggling with loneliness, older people who have lost their independence, people that have fled other countries, an unknown health challenge to climb..... the list is endless because life is just plain hard for everyone at some time or another.   But the above challenge requires a choice - a choice to live generously - to sacrifice time and energy to use what I  have to make someone elses day a bit better, expecting nothing in return.  Equally, maybe there are some (um... not us cos you all know about us) that need to open up and do life stronger because you've allowed others to walk alongside you and share in your struggles. 

I'm seriously hoping that tomorrow is a very dull day - I'm not sure I can cope with another crazy one. Candace is back from school camp tomorrow, and I am so glad she has missed this week of crazy and she could just be a kid, but I have missed her terribly.  Jaz has done so well being largely ignored, but she is great company and hilarious and quite able to whip up a basic meal (yoghurt and cereal IS an evening meal in our house!).

Ah my ramblings help me to sort my head after the adrenaline of a 'day-in-the-life-of-Sam' - tis as much for me as any reader that persevered!  Thank you for those that pray - I believe God is with us each and every day giving us the strength, joy and peace to walk.  His courage and hope never runs out when mine does.... and He can cope with my rants and disappointments, for there are many of those too!

And a bad joke to end with that I heard in hospital today:
Q:  What do you call a  three humped camel?
A:   Humpfrree

Goodnight X