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

Tuesday, February 21, 2017

Frustration..... but Sams ok!

Sam was discharged from hospital on Friday evening, after having his IV meds at 4pm.  A referral was completed and sent to the Home Care Team so that he could have his Saturday dose at 3pm in the community.   The drug he was on (amykacin) is very strong and has to be closely monitored as to how much is in his blood and the daily timing is crucial.  The referral also stated Sam would be at his Dads place for the weekend.

On Saturday morning I was woken by the Home Care Nurse.... um, anyone that knows me knows that I love sleep.... and having not had a decent unbroken sleep in weeks, I was less than impressed that the nurse hadn't read the referral and woke me up!  That afternoon Francis and I were texting about some school supplies for Jasmine, when I asked him why was he in a shop at 3pm - he should have been home with Sam having his infusion.  It turned out the nurse had shown up and given the drug at 11am!   This was basic nursing not being done - checking the timing of a drug to be given.  And if you aren't familiar with the drug there are protocols easily available to check.

Sunday afternoon I attempt a nap, well aware that Sam was coming home and therefore no break for a couple of weeks...... the nap never happened as Starship called to say that Sams blood trough was very high.  The drug that he had been given should have been in the range less than 1 - his reading was 8!  So after a couple of calls with Starship to try to figure out a way forward, it was decided that Sam was fine at home and someone would call me on Monday. So Sunday nap also gone.

Sunday night I spent 30 mins writing to Sams Paediatrician asking for his advice and to ensure a complaint/Incident form was to be completed.  I could have ignored it, but it irks me that sloppy nursing hurts kids - there needs to be accountability and to see if there are things that can be improved so this doesn't happen again.

Monday morning I had no idea if I would be able to do anything I had planned that day, but by 9am I had taken 3 calls (1 Starship surgeon, 1 Home Care Team, 1 Middlemore Paediatrician) all trying to figure out what to do.  In the end Sam went to school as usual and I collected him at 10:30 and went to Starship.  He had bloods taken and they were sent off to check his kidney function and drug levels.  We hung around, loitered in various friends rooms and play rooms, awaiting the results.  These came in around 2.30 and the level was down to 1.1.  The pharmacist decided the Monday dose could be given, but we were to wait until 4 for that, so the level would have dropped below 1.  We were about to leave at around 4:45, when we were asked to await some other blood results.... At 6pm we got the all clear to leave with his Creatinine (Kidney function), Potassium and drug levels all in an ok range.

The knock on effect of human errors in the medical world is huge.  I understand that humans make mistakes, but sadly the fall out is far greater than some receptionist making a typo.  Thankfully it seems that Sam wasn't physically harmed this time.  He did however miss most of a day of school, which he can ill afford to miss.  Last week he made school only for 1.5 days - it is disappointing when he misses them needlessly.  No hospital board pays my petrol when one of their staff messes up, my girls are at home fending for themselves when we had plans, my plans for Monday didn't happen.  Comments that staff make in the hospital intrigue me, as it shows they become blinkered to the human being they are treating.  I left hospital after comments like, 'just pop back later then....', or 'come back tomorrow if you want....'.  I don't want to pop in to hospital, I do have a life and enjoy reading and walking and more things than discussing blood results and I do have two other children that are trying to be kids and they need me.

I'm not sure if this will ever change much..... it's been 7.5 years and many de'ja'vu moments for sure.
People are people wherever you go - some work passionately, some work for a pay cheque, we all go through our day with our own unique set of strengths, weaknesses, joys, lows, distractions and concerns which impact how we function and relate.

Today he left school 45 mins early so he could be at home to have another blood test/trough and then hooked up to his IV drug by 3pm.  Tomorrow I should get a call with the level, to see if he can have his second last dose.

Tonight I am thankful that Sam is asleep happily after a big giggling fit that nearly made him vomit! . I had to lean over his bed to get the controls (it's a hospital bed) and he thought it was hilarious when he put his legs on me and I feigned that I was pinned under him.  After 10 mins of 'again, again... reach for the controls again' he gave up and asked for a vomit pot.  It is so lovely just enjoying the moments of that unbridled giggling (not so cool re the vomit) - just normal kid stuff!


Thursday, February 16, 2017

IPhone post - FTS (Fat Thumb Syndrome)

IPhone posts are slow due to severe typos due to fat thumbs, but here goes. I leave the laptop at home for the girls for school work. Speaking of the girls - I am so proud of them staying home all independent (& secretly delighted to be trusted). I am very grateful for tenants downstairs who can keep an eye on them!

I write this from Ward 24b - Surgical Ward at Starship. After various calls and negotiations between teams-hospitals, I was asked to bring Sam to Starship. We arrived st 2.30 yest afternoon. Around 6 pm he had his first dose of an IV antibiotic as well as his daily dose of anti-fungal. By 8 we were on the ward. Thankfully he had a really good sleep - no temps, no waking in pain! His urines are both still very sludgey, but he is well in himself. We await a plan, but due to him not being hooked up to his feeds until 9 (usually is 6 at home), he is bed bound until 11.

So we await a plan - I'm guessing they may want to keep him one more night just to be sure. That  would actually work well for me as I have a 9.30 Starship Clinical Excellence Committee meeting tomorrow, so either way I need to be in SS tomorrow. It would be nice to just get up and roll in from the wsrd ... Im tempted to stay in my PJs ...... hmmmm

Francis popped in last night to see him, so he was very excited to see him. This morning Sam is sitting in his bed playing with cars amd his caravan - no surprise there!

Right, I am off to find real coffee!

Wednesday, February 15, 2017

4.30 am

Yes it is 4.30 am and I have given up on sleep.  Sam is watching TV from his bed (Doc McStuffin) and I thought I may as well do something productive.

Every 30 mins since midnight Sam has been screaming out in pain.  The only relief that seems to work is to give him a bladder wash out - push 60 mls of warmed saline into his bladder with a syringe and then drain it out.  It gives instant relief, he goes back to sleep until the next round of pain wakes him screaming again.  He is so tired, but I am hoping the distraction of tv, will give him some distraction from pain. He has Pamol and Ural on board, but it doesn't seem to be doing anything.

Mondays clinic went well - It was decided to take urine samples and a blood culture off his port. Both urines are growing bugs.  The quote was 'a Zoo of bacteria'.  It seems he has a fungal/yeast infection in his bladder, which we are now treating with an oral med (Fluconazole).  We await results of which type of bacterias (I think 3 different ones present) are growing so the Infectious Disease team can figure out a treatment plan for that..... (just off to do another bladder washout - that was only 20 minutes).

OK, it is now 4:49 and I am back.  Ironically Doc McStuffin just said to her sick toy, 'you know, you should take a nap'.  Great advice!

This week has been trying.  The cumulative affect of living with broken sleep is tough on everyone.   School is a good distraction for Sam, but I wonder how this affects his development/brain/emotions. He went to school yesterday in spite of broken sleep the night before, but tonight has been so much worse, so I think I will keep him home today.  Ange (his carer) can stay with him and do some school work, so I can go back to bed.  I feel like a shift worker, but there is still so much to do in the day to keep him ticking over.  Yesterday I took 4 calls from Drs and had to drive to Middlemore Hospital to pick up meds, plus I needed to drop in new prescriptions for his feeds.  It is now 4.55 and I need to go to him again.... poor wee guy, the day (or night) in the life of Sam can be very unpleasant for him.

The plan tomorrow is hopefully to take a call from his Paediatrician at Middlemore to find out a treatment plan for the bacterias.  It could involve being admitted to Middlemore (more on that later!), a nurse coming home to start him on IV meds, or another oral med thrown in the mix.

So Sam has always been treated at Starship - NZs only childrens hospital.  Kids from all over NZ come to Starship for specialist care, if it isn't available in their local hospital.  Sam is under many different teams (Surgical, Urology, Gastro, Cardiac, Respiratory and Renal).  But because we don't live within the catchment zone for Starship (ie, it isn't our local hospital) Sams lead Paediatrician has to be in our catchment (Middlemore).  And this is where crazy politics comes in.  If any child presented with a UTI, it is usually dealt with by a Paediatrician -  no further specialists are involved. So after 7.5 years of being treated in Starship it has now been deemed that Sam should be treated by his local hospital (ie his Paediatrician).  Now his Paediatrician is fabulous - kind, clever, lovely manner with Sam etc.... but nothing is ever straight forward with Sam and although Middlemore are now taking him on, his urinary tract is affected by the dozens of surgeries he has had and the bacteria is also linked to gastro issues.  It means that we will potentially be admitted to a hospital where the nurses will all need to be trained in bladder wash-outs etc... as these aren't common practises.  Of course any nurse could learn it (I do it and I'm not a nurse), but I am feeling very vulnerable with everything being new... and also not having a choice and just being told suddenly this is what will happen.  I am concerned that Sam may not get the care he needs and that it will be back like days of old in Starship where I was always required to be at his side to make sure his whole self was cared for.  I am also so aware that historically Sam doesn't remain straight forward, but once admitted there is need for surgical input or his lungs become compromised and he needs respiratory input/care.... I am unclear what happens at that stage and am assuming we would then get ambulanced to Starship where all those specialities are?  Interestingly even the girls are feeling vulnerable, as this is all new to them - Starship is familiar to them and they know where to go for places of quiet, to find free food etc when they need a break from Sams room.  So this is going to be an adjustment for all, but underlying it is an anxiety that Sam needs to continue to get the care he requires.  I know I don't understand the full story and am not privy to the many discussions that go on behind the scenes to care for Sam, but being in a place of forced transition isn't very nice.

Anyway, these are questions for Sams Paediatrician tomorrow/today.  It is now 5.22 and I have just done the 4th bladder washout since I started this less than an hour ago..... hmmmm, will also be chatting to the Dr about pain management, because this is not a good quality of life for Sam.

I was going to head away with the girls for the weekend, but I think I will cancel as I need to catch up on sleep from the past 2 weeks, ready for the next 2.  The girls are a bit disappointed, but then they also live in this house and see what goes on, so they are kind enough to understand.  We have some free tickets to Rainbows End (theme park) so they may get to use these instead if the weather is good. I have got some extra funding for 1 night a week of an overnight sleeper - the paperwork to employ her is also on my list to do tomorrow - that will be amazing to have in place and will be a huge help.

Right, it is now 5.30 and I will try to get Sam back to sleep.  It would be nice to get an hour in before the girls get up ready for their day.

Friday, February 10, 2017

Many thoughts....

This past week one of Sams Starship buddies lost his battle with his challenging body.  Another beautiful Starship Warrior has left us.

The bonds you make on this journey as the parent of a child like Sam are hard to explain in words.  As you mingle in the ward corridors, waiting for time to pass as your children are being operated on or for results from various tests, there is an unspoken understanding of the common pain and heartache we share.  The understanding of physical and mental exhaustion doesn't need explaining.  We enjoy the highs with them and weep with each others failed procedures.  We understand how hard this journey is, yet we know how much harder our journey will be with out them.  Sadly this became the reality of another dear family this past week.

I have learnt so much from this couple as they adopted their boy, knowing he had huge medical challenges.  Their generosity was evident to all as they sacrificed their time and lavished their love on him.  And the results were so beautiful to behold.  A boy that knew he was loved.  Although non-verbal he communicated so very clearly his joy and security in their family.  I can not fathom how hard it will be for them to now do life without him..... but they will, just as others have done before. For life is each day, with pain, with challenges, but always with hope.  As they shared their belief in a loving God, at his funeral, their strength and confidence in tomorrow came because they have walked this journey with God helping them each step of the way.... and He isn't about to stop now.

The funeral was a beautiful celebration of a short life, but one that impacted everyone he met.  My heart is sad as I will miss him.  I grieve for his dear parents knowing it will be empty days ahead.  I grieve for other friends who have walked this same lonely road.... and I hug Sam a little tighter tonight, as I have the privilege of being his Mum.

His UTI isn't clearing and he has been in a lot of pain - especially through the night.  He has been waking 4-5 times each night and begging me for a bladder washout.  It seems to give him relief for a short time.  Today Starship thought an ultrasound would maybe help pin point the infection.  At 2.30 I picked him up early from school and took him in for 2 ultrasounds.  The first was with a full bladder and the second one after I had drained it (and the urine was sent to the lab).  The kidneys were also scanned.  The good thing it showed was that the bladder was totally emptied by doing a manual drain.  This is good, as even a little residue of fluid could be potential for infection.  Tomorrow hopefully someone from the gastro team will call me with a plan, as his antibiotics run out tomorrow and he will need something to help clear the urine.  Tomorrow is mufti day at school to celebrate Chinese New Year so he is very excited to be wearing his red t-shirt to school.  It is very handy that Santa and the Chinese both like red - once less thing for me find!

I leave you with photos from the weekend.  We tried to devise a system which involves less screaming so that other beach goers can enjoy their day out.  A big thumbs up was given 'kayaking' with Uncle Greg in Beachlands.

And first day at school photo from last week, which every child tries to get out of, but they really have no choice.....eventually all 3 made the shot!  Sam adores his sisters and they are so good with him.

This weekend will be shaped by whatever hospital tell us tomorrow.  On Monday Sam has a mid-day clinic with the gastro team to decide how to change his feeding regime to shorter hours and higher calories.  Somewhere in the weekend we are hoping to catch up with friends for a picnic/play date on Saturday, Sunday is church in the morning and hopefully another beach outing in the afternoon. As usual all plans come with the caveat, 'depends how Sam is'.

Enjoy your weekends.