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.

Monday, January 30, 2017

It's been a while!

Hello again!  'Pinch and a punch for the first of the month' is nearly upon us again.... and tomorrow is Day 1 of school for Sam.  He will be heading in to his year 3 class, with Ange (his fabulous Learning Assistant/carer) with him.  Sam went to bed concerned over which playground he would have access to, but I hope my assurances that he would be told would all be very clear in the morning.

Sam has had a busy summer, with mostly good health. This summer has been very different for him, as this is the first year without an exposed Central Line - his new Portacath is embedded under the skin, so this means he has been able to be in water!  Sadly the NZ summer has been rather lack lustre, with it only really arriving in the last 5 days, but he has been able to get out in the water and grow a little in confidence.

Sadly the last 10 days Sam has had another UTI (Urinary Tract Infection) that has meant antibiotics 4 times per day/6 hourly.  The bacteria that grew from his urine was a totally new one for him and so odd that the lab requested I send in another sample in case it was contaminated.  On Friday morning we popped into hospital and dropped in a sample, which sadly confirmed that he truly is growing this new organism.  Unlike all the other myriad of UTI's he has had, this one left him in a lot of pain (waking every hour and begging for me to give him a saline bladder wash out), BUT his urine stayed clear.  Usually the first sign of a UTI is the urine turns milky and thickens.  So this was a weird scenario all around.

I start the year again so grateful for medical care 'second to none'.  Yesterday (Sunday afternoon of a public holiday weekend), Sams Paediatrician phones me to sort out a change in antibiotics and to check in on Sam..... so so grateful!  Sam is currently clinically pretty well, so we are hoping the next 2 week course of antibiotics will clear it and all will be fabulous. This week Sam also has an outpatients clinic on Thursday afternoon (he will miss a couple of hours of school).  I will also do a class chat with his classmates, which is thankfully accompanied by Sams play puppet, Sammy James Jnr, to help educate all and sundry in an age appropriate way.  I think I also have a middle school staff meeting to attend to help the staff have an awareness too.

Sam has been much more vocal about his medical stuff over the past 4 weeks. He has been telling me he hates being 'special' and 'I wish I didn't have tubes anymore'.  This is all very normal behaviour, but I would appreciate prayers for wisdom as I help him through what is his reality.  I would honestly switch places in a heartbeat if I could, although I really dont know how I would cope with all he has to.

I will endeavour to update the blog more regularly.  I leave you with photos of Sam and his adventures over the holidays:  At Mt Maunganui (I enjoyed the view and the water, Sam enjoyed his cars!);  Sam on holiday with his Dad enjoying the water and camping;  His very cool new bed at his Dads place; Sam having his first sleepover with his cousin Xavier and hotpools with Candace.

Saturday, December 24, 2016

Christmas Eve 2016

Sam had a rough 48 hours after admission. He was in so much pain with his stomach hard and blown up like a balloon. He literally did not sleep for 24 hours and it was a tough time trying to consol him. A dye contrast dye study was done on his gut,  to see if there was a blockage or adhesion. Sadly this didnt show much, but it acted as a laxative and 15 mins after it being put in his Jejunum his vowel
Woke up! Over 8 hours he deflstes and his stoma losses were triple what they would be in a 24 hour period.  A sample of the stool was sent to the lab and it came
back having grown a bug - so it seems he had a bacterial infection and antibiotics have been stsrted. Yesterday he mostly dozed on and off and his feeds were slowly started again. He had a really settled night and is now back on to the higher rate of nutrition. It was decided to give him a feed that is easier for his gut to digest, than what he was on prior to admission. So it is a backwards step for sure, but slow and steady for now.

Yesterday his sisters came in and hung out in hospital - with the high possibility Sam will be in for Christmas, Candace set about to create some Christmas joy in Sams room - check out the very cool tree - no chance of needles dropping off this - sh has done so well to create this out of hospital issue incontinence sheets etc!

Tuesday, December 20, 2016

A pre-Christmas hospital dash

Today started so well and was all planned out.  We had 4 lots of friends that we were goinf to see - 'or ing coffee and catch up with one family, followed by lunch with Sams carer and family, then headingover to the city to see other friends. All seemed well until I gave Sam his first bolus of the day. His tummy seemed rounder than normal
And he was sore.  His ilieostomy bag hardly had any outputs in it. I kept an eye on him and noticed he was restless. After lunch I decided as he hadnt improved we would pop into Starship on the way to seeing our friends.

How dumb am I?! - one doesnt just "pop into hospital'. Aftter 7. Hours we are still in the emergency dept, but he has been Admitted with either a bowel Obstruxtion or severre constipation - 2which is weird as he is on a liquid diet.

In himself he is very happy and has no other issues. His lovely sisters sat in their various favourite hospital spots for about 4 hours and read and ate, but they have now been rescued by a dear friend who will house and feed them for the  night..

As the girls left they gave Sam kisses and instructions- 'Get outw before Chrsitmas!'.
This blog has been written in a poorly lit room at 11 pm, on a phone on dim (as battery about to die). I havemt got my reading glasses with me, so it hasnt been checked that well and my thumbs are way too fat foe the keys on this iphone,  so grace required when reading/translating this!

Surgical are taking Sam in and I am hoping and praying their skills wont be required to resolve this.