Tuesday, August 30, 2016

'Normality'

There is no such thing as 'normal' in Sams life.... or ours for that matter.  Routines and schedules often get to Plan D before breakfast!

Today and yesterday Sam managed to get hooked off his pumps and get to school for a couple of hours in the afternoon.  It has been so good for him to be back doing 'normal' things - lunch time he played hop scotch with his friends - so nice to see him out in the sun enjoying kid stuff.

He was home for an hour before he was whisked back to Starship, for a night with Dad.  This hour is great for him as he can have a bath, choose a book, play with his own toys and hang out with his sisters.

Today he had the added bonus of a surprise visit from his cousin Jordan and Aunty Janice.  They have been faithfully following Sam (& Bees) health updates.  In light of Bees recent medical undertakings, they felt it was right to share their Dolls wheelchair with Bee, while he/she/it (?) fully recuperates.  Sam loved whizzing Bee around in it and Bee looks forward to having a ride each day he/she/it returns home - sometimes things 'walk' in hospital and are never seen again, so this will stay at home!


We are hoping that the next 3 days of this week, will be much the same as today - hook off in hospital about 10 am, 40 minutes on the motorway to school, 2 hours at school (meds and drains at 2pm), 1 hour at home, 40 mins (or anywhere up to 2 hours!) on motorway and back in for hook up at 6pm. The good news is that Sam is putting on about half a kg each day, now that he is back on IVN.  He is looking healthier and those cute cheeks are even more sqidgier and kissable-r. Yes I know neither are good england!

The UTI seems to be taking a back seat with 4 x day oral antibiotic and 3 hourly bladder wash outs.

Right, off to sleep, ready for another day. X

Sunday, August 28, 2016

Rhinoplasty and a UTI

So the wait list time on the public health system for Bee Rhinoplasty was longer than we had hoped, so it was a case for private surgery.  The procedure was performed with a non sterile technique on the kitchen bench.  Scissors, needle and thread and stuffing were laid out beside the sleeping bee.  Sam was with Bee during the procedure and was involved in the choosing of the fabric - blue and white chevron won over standard red, pink and purple dots and orange.  Both Bee and Sam are delighted with the new look, although the stitching needs reinforcing already.  I am hoping this is not the start of a plastic surgery fetish, as Sam has already commented on whether I could do something with Bees lips.  I am working hard at teaching my kids that the outward appearance is so unimportant and temporary and that God is more interested in our hearts!  Bees heart is of course just fluff, but Sam very much finds him to be his best buddy and life long partner.  Tonight Sam is fast asleep with Bee in his usual position right beside him.


Francis brought Sam home yesterday for a few hours. Sams first job on arriving home was feeding his goldfish and then he ran and found his remote control car.  He always loves hanging out with his sisters and Candace did lego with/for him (Sam lost interest).  Sam had to be back ready for his hook up at 6.

Today Sam didn't get out of hospital, as he had had a rough night of pain and has a UTI brewing. Tonight he has needed Tramadol and a heat pack (on his back/renal area) in order to get to sleep.  We are back to doing 3 hourly bladder wash outs, which he asks for as they give relief, but are very painful to do and he screams in agony for the 30 seconds it takes to do it.  So he lives this life of courage, asking for something that he is aware will cause him intense pain, yet the outcome is worth it.  There is a life lesson right there for us all - this boy teaches me so much.

I am guessing that he won't get out tomorrow, as in the early days of a UTI his hand is constantly attached to his privates, and as this is totally fine and acceptable in the confines of Starship, it doesn't work in general life.  Hopefully once the pain dies down and bugs are getting the boot with the antibiotics, he will be able to get to school for a few hours each day..... we hold the plans of each day very lightly as they can change so very quickly.

X

Wednesday, August 24, 2016

Happy Day

The girls and I spoke to Sam today, as we didn't manage to get in - car in the workshop getting fixed. Sam was very happy to tell us all about the book he had read, which puzzles he had done and to ask the girls about their days.

He said he felt much better now he was back on IVN (Placebo affect after 1 night??) - whatever, we will take it!

I am figuring out the coming weeks and will try to get a couple of nights a week up in hospital to overnight with Sam.  I have been missing him and he has been missing me, so we are hoping to get a routine going.  Jasmine wants a Saturday night off (fair enough, she has done the last 4), so she can do some other things this weekend.

I leave you with a rather gorgeous piece of writing by Candace - our middle child.  She submitted an article to a support group that we belong to.  PNDU (Parenteral Nutrition Down Under), is a support and lobby group of Aussie and Kiwi families who live with IV and/or enteral feeds.  They are an inspiring bunch of people that share their personal journeys of life 'hooked up' , medical knowledge and insight, as well as fun and photos - It just is better doing life with others.  Every quarter 'Dripline' is produced and sent out to friends, families, hospitals and medical personnel around Aust/NZ - feel free to read it all, but flick to Page 5, for 'Siblings Perspective' and you will see a very cute curly haired loveable muffin and one of his gorgeous sisters.

Dripline - A Sibling Perspective

Happy reading.
X

Tuesday, August 23, 2016

A rough 24 hours for Sam

Last night Sams monogen feed concentration was increased... and Sams system didn't like it.  He had a rough night of wretching and feeling awful.

Watching Sam wander slowly about the ward corridor it is evident he is lacking energy and is the thinnest he has been in a year.

After discussing things with the team, and a phone call with Sams main surgeon, it as been decided to pencil Sam in for surgery on Monday 5 September - this is the surgery that the last admission was trying to avoid, but in light of how he is doing, actually it's time to admit defeat and do it.  This surgery is to go in to his chest/neck (or wherever) to try to patch up the leak, that has been the source of the fluid in his chest cavity.

And in light of an upcoming surgery, they have decided Sam needs fattening up, so tonight he was hooked back up to a bag of IVN (Intravenous Nutrition, previously called TPN).  So he now is having nutrition directly into his veins.  Tonight they will halve the monogen feed going in to his gut, as he isn't reliant on it, and to give him a break.  When we told Sam he was going back on IVN, he was so excited and said, 'YAY' and gave me a big hug!  When the medical teams, dieticians and us are all slightly flat having seen Sam not respond to treatment, Sam is so delighted to be back on something that is like a long lost friend - IVN has been his nightly friend, that quietly fed him as he slept.... and he understands this part of his life and medicine, where as the whole 'chylo-thorax' and chest stuff is new and uncertain.  IVN will be connected to the PICC line in his arm.

The teams will see how he goes over the next few days, but the plan is that hopefully next week they can get Sam off pumps for between 4 - 6 hours, which means he could get to school for a few hours each day.  He misses his friends and schooling so much and this would help in getting him through a week of hospital.

Today Sam had a chest xray - he is so brave and courageous - stands and does what he is told (well he could do it without instructions!).

Sam had a special visitor today.  Our dear friends know of Sams love for all things 'car'.  So a while back they gave him his very own AA mechanics bag.... and each time they see him some new tool or device seems to be added.  One such time saw him with his own little hi-viz jacket being added.  Well today he had to don his jacket whilst Uncle Greg gave him the next kit installment - jumper leads! They had to actually make them, and it was very cute to see Sam and Greg working it out.  Bee can be seen watching on from the comfort of the AA bag.  Was very fun to see Sam busy at work and then he pottered for a bit with his cars and kit..... such simple things, but am always so conscious that people give up their time, drive hours to see him, bringing him lovely things to help him get through his long days in hospital - does make my heart glad... and brings a huge smile to Sams face.

I leave you with Sams day in photo form.  Sam loves visitors, but please do flick me a text or make contact if you are wanting to come up - would hate for you to go to all that effort and he is in an MRI for 2 hours!





Friday, August 19, 2016

A tough end to an even tougher week

Sam had a great half day at school yesterday, blood tests in the community and hanging at home. Last night I hooked him up to his two pumps, but he didn't settle well.  I was sleeping in with him and every 5 mins he would call out for me to help him sit up as he felt sick.  He would gag and wretch, but due to his stomach being on free drainage, fluids would only escape into this bag.  He would lie down again and I would hope he would fall asleep and all would be well - this went on until around 3.30pm, when I gave up and changed his feeds.  I decreased his milk feed from 94 ml - 60 ml/hr and increased his peadialyte from 65 ml to 95 mls/hr.  I was concerned he would be getting dehydrated and I hoped this would help his stomach to settle a little.   It did.  He would sleep for around 20 - 30 mins at a time.  

During the night his ilieostomy outputs (poo) came to around 1 litre.  Yes, I have to measure his poo. Anything above 800 ml in a 24 hour period was concerning - Sam had lost 1 litre in half that time.  It was very clear that managing his fluids at home, was just not possible - for some reason his body was not coping with the monogen feed and as I had reduced it to help him sleep/stop vomiting, he only got 2/3rds of his daily nutritional/calorie needs, as well as losing way too many fluids.

At 9.30am we arrived at Starship and so started the sad realisation that the past weeks of trying to make Sam tick with the many changes we had implemented, had in essence failed. Tonight he is asleep and has started a 24 hr regime of feeds, but if he doesn't tolerate this, he will be back on TPN/IVN tomorrow.  This is hugely disappointing.  I am really sad for him. Since he came off TPN 6 months ago his weight has stayed the same and not increased, but he seemed okay.  With the challenges of the past 8 weeks, he is skinnier than ever and he needs calories to give him the energy to deal with his compromised lungs and other issues.  There were whispers today of possible surgery to try to fix the chylo-thorax issue, which plagued him last admission - it was hoped the monogen feeds could have given him a 6 week grace period to help his body find an equilibrium again, but his body is frail and we can't wait.

Sam loved seeing his friends at school yesterday - but sadly I don't think he will be back for a while, as he has a few significant hurdles to cross before then.  The medical teams are disappointed, as they have worked so hard to come up with non surgical and non TPN solutions, but we may have come to the end of the road with those.

So tonight my heart grieves for Sam. He has endured much so bravely, but now he must endure even more.  I was hoping he could experience a life without a 'line' and to be able to swim next summer.  I was hoping he could be a part of our family at home.  Sadly our family is very fragmented.

When I explained the above scenario to the girls tonight, one shouted out, 'Oh stink, we just got him home... I want him home!'.  The other said, 'It just doesn't seem fair....'

Yep, I have to agree to both.  Life is so not fair.  But we can not give up and have to make good choices for today.  I am exhausted after a night with only a couple of hours of sleep and getting him admitted today.  Right now I just need sleep and I hope tomorrow is a better day. 

Thursday, August 18, 2016

Sam is at school TODAY!

Yes, we managed to get Sam discharged and home yesterday afternoon.!  He was so excited about the little things - getting in 'Rhonda the Honda' (my car) for the first time in nearly 8 weeks, looking at traffic on the motorway, seeing his goldfish again!  When the girls got home from school there were big hugs and squeals of delight from them all.

As we unpacked Sams gear back into his room, I spotted his wall calendar:


I felt so sad as I thought back to the last time Sam had been in his room.... so much of his life spent negotiating surgeries, procedures, rehab etc.... then I felt immense pride for the courage he shows.  I have been teaching Sam about the word Courage since day one of this admission.  As he is old enough to voice his anxiety of certain procedures, on this admission he was telling me he was scared and what he didn't want to do.  I told him that he needed to be courageous - to do something even though it was hard, just because it was the right thing to do.  Sam is courageous.  As I drop my girls to school each day I shout after them, 'Dont forget to be .....' and they shout back to fill in the gap, 'Courageous' (as they roll their eyes).  As we watch the olympics and hear the back stories of many of the athletes, I am amazed at their tenacity and courage to have faced often hard situations, to reach their goal.  Courage - this is the word for Sam at the moment ... actually I could do with a dose of it too!

Sam has gone to school for the morning and was SO excited at the thought of seeing all his buddies and teachers again - School is such a safe and happy place for him, which truly brings delight to my heart.  I am thinking a morning will be more than enough for him, as his little body adjusts to being up and about and active, after such a long period of inactivity. After school I will meet him at the local Lab, so he can have some blood tests done.  Home after that, where he will need to be hooked up to his Monogen milk feeds.

Sam has come home on quite a different regimen to what he has had before, so last night I was tense as I tried to get my head around the change in feeds and meds and what is needed to keep him ticking over.  He is now on 19 hours of milk feeds and 12 hours of electrolytes (running at the same time, in case you think NZ has 31 hour days!)  He has 3 x day meds (to help slow down his poo output).  He also needs to have all his poo measured and noted.  I have clear and strict instructions on what to do should his outputs be above 800 mls in a 24 hour period (add in some more hours of electrolytes) and what to do if it is high after 48 hours.  Sam will also need to have blood tests on Mondays and Thursdays to monitor his magnesium and potassium levels.  If the potassium levels are low Sams paediatrician will call me and I will need to give him a medicine in his GJ tube.  If his magnesium levels are low it will be straight into Starship for admission and an IV magnesium put up.  Last night Sam was desperate to have me sleep in his room - for the last 8 weeks he has had night time companionship.  He woke at 3 am shouting, 'Mum, empty my poo bag!'.  It was bulging full, so I obliged and measured it stumbling around half asleep and hoping I wouldn't spill it.  He goes straight back to sleep ... sadly this old brain doesn't nod straight back off... so will need a nana nap today.  I finished paid employment last week, so am very grateful to be able to use my days so I can survive the nights!

It is great to have Sam home, but I am feeling unsettled as he isn't stable - his outputs are all over the show and the pressure to care for him while maintaining all of the various requirements does weigh heavy on me, all whilst trying to be Mum to two gorgeous girls.  But as I had a wobble last night I was reminded of a text from a friend this week: Psalm 61: Hear my cry, O God; Listen to my prayer. From the end of the earth I call to You, when my heart is overwhelmed and weak; Lead me to the rock that is higher than I.  For you have been a shelter and a refuge for me'.  Amidst the tiredness and uncertainty, when I pray I know peace and certainty again - certain that our family is not alone and that there is a God listening and protecting and helping us. 

I leave you with a photo of him the day before discharge - he went for a walk with his Dad and found the hospital Muffin Break.  As Francis had his coffee Sam enjoyed the attention of people admiring his bee and being out of his room.  Bee is getting his new nose today and Sam has decided he would like it to be blue - watch this space!


Monday, August 15, 2016

Another Week begins

On Saturday night Jasmine (15 year old daughter) phoned me from Starship, as Sam had something to say to me.  This little quiet sad voice came on the line, complete with little whimper and sniffle....'I miss my friends Mummy'.  The last 2 weekends Sam has been a bit flat.  During the week his room is bustling with literally dozens of medical visits every day.  Weekends are quite the opposite.  Skeleton staff pop in, but there are hours without interruptions.  This break is bliss for us as care givers, as life in the 'fish bowl' can be exhausting, but it is quite the opposite for Sam, as the interruptions help him get through the hours in his bed and hooked up to machines.   I think behind Sams comment and sniffles, he was actually saying, 'I have had enough and just want to go home'.  

He is a remarkable little boy, who has endured much.  

He did have a variety of visitors in the weekend - cousin, Nana, Aunties and a special friend from Tauranga - I only managed to snap one of them!

Over the weekend Sams Octreotide was stopped - this was the 24 hour medicine (given IV) which was used to help slow down the production of fluids in the lymphatic system.  His breathing has seemed to be fine since this change, but his ilieostomy outputs (liquid poo) has gone from around 500 ml - 1500 ml/24 hours.  Today I am sure this will be reviewed.  

Sam was giggling and chatting as I spoke with him last night and had perked up.  Sam has told me I need to bring in needle and thread and fix Bees nose - Bee is due for his third Rhinoplasty - the bees nose is hanging by a thread - literally been loved off!

We dare to hope that maybe Sam could come home by the end of this week?



Monday, August 8, 2016

Sibling Affection!

We hear so much about sibling rivalry.... well that is not something evident in our family where Sam is concerned.  Today as Candace walked into Sams room he literally squealed with delight, they hugged and Sammy was saying over and over, 'oh Candace I have missed you so much, I love you!'. It was such a precious moment. 

For no real reasons, Candace hasn't seen Sam in two weeks - netball practice, friends sleep over etc, just has meant that between juggling school and weekends, they haven't seen each other. Today I decided to pick Candace up at lunch time and head in to hospital to surprise Sam.  They had such a lovely afternoon together - was worth way more than the lost science lesson at school!  He was so proud to show her his physio/breathing exercise and kept making sure she was watching.  They went for a walk, albeit just to the end of the corridor and back.  They cuddled and read books and just had fun.... then they argued over the television channel, so just normal siblings really!  Jasmine has spent the last two Saturday nights sleeping over in Starship, to give us a break.  Plus she loves hanging out with Sam and Sam thinks it's very fun and cool to hang with her.  So we are incredibly proud of our beautiful, fun and kind daughters - Sam just couldn't have better siblings!





Sam has done really well since his chest drain was removed and tomorrow it is time for another change.  His mitrofanoff drain will come out of his bladder.  This drain has been in since the bladder surgery of 4 weeks ago.  It will mean that we now have to manually drain him with a catheter every 2 hours, as his bladder has reduced from being able to hold around 280 mls, down to 80 mls.  Childrens' kidneys normally pee out urine at the rate of a minimum 1 ml per kilo per hour.... but Sam has a lot more fluid going through him than a normal child, so Sam is 20 kg, which means he will be producing at least 20 mls an hour. Enough maths - bottom line is we will have to clock watch more than in the past.  With each catheterisation there is of course risk of introducing bacteria, but we need to see how his body copes with his new teeny bladder.  We are hoping it will reduce his urinary tract infections, as the urine shouldn't be able to pool in floppy sacks of bladder, like they used to - only time will tell.  It also means Sam will be able to be more mobile, as he will have one less drain/bag to negotiate as he walks around - hooray!

Sleep well XX

Friday, August 5, 2016

Week 6 Update

It has been a huge week for Sam.

Yesterday Francis and I met with the many teams and heard their plan.  As we listened we were so aware of how many hours of thought and skill had gone in to Sams plan and how much care and kindness is sitting around that table... all there to help Sam have the best quality of life he can.  It is truly something lovely to be a part of and witness, yet it was a meeting I was dreading and fearing as Sam is at the forefront of medical knowledge/advances....and I feared walking in and seeing a member of the Palliative Care team ... but thankfully they weren't in on the discussions.

My fears were based on nothing - as usually is the case.  When will I learn that there truly is no point worrying about anything, as it achieves nothing!

The plan started in full swing today.  Today Sam had his chest drain removed. This has been in situ for around 4 weeks so he required medaz. to help with the pain and removal of this.  2 sutures removed and out it came.  We then had a 'happy drunk' for a bit whilst the drugs wore off. I was at home with the girls, but I phoned nana and got to chuckle as Sam slurred and waffled away - he is funny when he is sober, but very funny when under the influence!

Now the drain is out and nothing else in his current care regime will change.  He will be watched and monitored for the next 5-7 days.  He will then have an xray to check the levels of fluid in the chest cavity.  If the teams are happy, they will then remove/change his antibiotics... and we will wait and see for another few days, then they will change a medicine he is currently on.... and wait and see.

They want to do it slowly and only one thing at a time, so it is obvious what the culprit is if something goes wrong.  We are happy with the plan and rationale, but it does mean at least another 2-4 weeks in, if all goes well!  

If they are happy with Sam after these 3 big changes we will be able to bring him home on the current nutrition he is on, which he will need to be on for another couple of months.  Unfortunately this feed is on a 20 hour pump cycle, so we will have to get creative about a safe backpack option so he can get to school.




1.125 cm tall!

There are plenty of things Sam can't do - he can't eat (yet!), he can't run and play, he can't skip, he can't climb a tree.  But there are so many things he can do.  He can draw people into his room like a magnet! He can make people feel like a million dollars as he remembers the details of their lives and asks them questions, He can engage with people of all ages and have them laughing.  He is such a joy and he constantly reminds me to not worry about the things I can't do, but to just do what I can do as best I can.

 We are so thankful for Angela, our trusty carer who has been with us over the past 6 years.  She continues to be with him in the hospital, making sure his education continues.

Sam has had so many visitors this past week from school.  Oh my goodness, the whole ward knew they were coming (he told everyone!) and you could here his squeals of delight and the kids playing together - truly heart warming.  I wasn't organised enough to email the childrens' parents to ask if their cute photos could be put online, but you just have to take my word for it. 

Yesterday his buddy Jett went down with Sam to the xray department.  Sam and Jett on the bed. Sam was so happy to have a companion.

We have been so touched by the kindness of Sams school community,  On Monday a knock on our door found a school Mum laden with meals for the week.  Sams class has rallied around and organised meals, gifts, cards and even a coffee fund! So practical and kind and it made me cry - happy tears!  Then as Hannah, Ry, Jett and their parents visited over the week,  they came with cards from class mates.  Such care and concern for us is so encouraging and fabulous and appreciated. Simple acts of kindness, truly touched us.  It is a hassle getting into the city, parking is a nightmare and expensive and Starship is a maze... so we totally appreciate the effort.  Thank you.

So the coming weeks/month will be a juggle as I need time with Sam and I need time with my girls.  We will do what we always do - get organised and plan, and when it all turns to custard because something unexpected happens, we re group and re plan.  Francis has been in with Sam most of this week ('bro-time'), and Nana has also done 2 nights, but I hope to get a couple a nights a week in with Sam - I miss him and he misses me... but he adores his Dad too.  Just too hard being in 2 places at once!

I am looking forward to sleeping at home tonight and popping in to see Sam after the girls netball is over. 

I do hope all you readers get to enjoy your weekend with your family - we have found the location doesn't matter so much, just being together is what is important.  Love the people dear to you and thank you for your care and love for us.

X Shirl

Monday, August 1, 2016

Waiting... waiting,.... waiting....

Sam has spent the week in hospital, largely waiting for the MRI. Monday and Tuesday passed, with 'hopefully tomorrow' for Wednesday... then the MRI machine broke down, so then possibly Thursday afternoon he could head to the adult MRI machine.  Finally on Friday at 3pm he was wheeled over to Auckland Public Hospital for his MRI.

It was performed under G.A. and he woke back in Starship post op recovery.  At this stage no report has been made and no feedback, so we hope maybe tomorrow there will be some news.

Before the procedure Sam, with the help of the nurse, Francis and Sam's wheelchair, wandered the ward. This was the first time out of his room in 5 weeks! He wandered wide and far chatting to all his subjects and making sure all was in order - he is quite the character!  

                                                        Dr Davy doing his Ward Round!

Sam had some visitors this week, which cheered him up no end! The Principal and Deputy Principal from his school popped in - so kind of them and he loved seeing them and putting together a new garage!  He also had visits from:  Hannah and her Mum, Nana (x 2!), his favourite nurses, Paul, Phil and Larissa - and others that I may have missed because Francis was with Sam and I was with the girls (sorry if I missed you!).  I don't normally list all that appear in his room, but I think because this admission has been particularly isolating, he has really enjoyed seeing people.

Tonight Francis has texted to say Sam has spiked a 38.9 temp, which is a set back - something is brewing, so they will send away samples from all the various bits and see where/what germs and how to treat it.  I am concerned about the chest drain which has been in for over 3 weeks and the site is looking a bit in need of a clean.  

Tomorrow he was potentially having an exploratory surgery (where they pop a camera down into his chest), but that may not be happening now, as the surgeon is waiting for MRI results.  I'm guessing with a temp, they also will be hesitant to operate.

Today I go to bed grateful for my beautiful family whom I love deeply, It's not easy living a broken life in hospital.  It's hard on relationships when time is pressured.  Tomorrow when I wake I am conscious it is a new day.  I read Psalm 119 in the Message Version: 'What you say goes, God, and stays, as permanent as the heavens. Your truth never goes out of fashion; it's as up-to-date as the earth when the sun comes up. Your Word and truth are dependable as ever' then it goes on to say ' I see the limits to everything human, but the horizons can't contain your commands!'  

The above fills me with hope - Sams current medical situation is unknown and people are unsure - peoples brains are reaching their limits, but I believe there are answers and ideas and help for Sam, which is why we pray.  I also believe that no matter how hard our lives are, there is something truly joyful in knowing that when the sun comes up God is with me to sustain me.