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!



video
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

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!

X

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!
X

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.