Friday, September 12, 2014

View from my bed

This is my view at 6 am - my little champ playing with cars.  He has been such a great boy and is doing well. 

 The urologist was in last night - a kind genius with a plan!

We hope to escape home on Monday, which is when he will have finished his 5 day course of an IV antibiotic.  We will go home on a different regime of bladder washouts - different timings and will also do the washouts with a topical antibiotic included called gentamicin. He is talking to Infectious Disease team about the right cocktail for the washouts then we will have to learn how/what/when  to do these.  The plan then is to come in to one of his clinics after a period of wellness and do some imaging of his bladder during and after drainage, to see where the pockets of urine are hanging out.  Because Sam doesn't pee by the normal route, it shows that his bladder has lost all elasticity, which means when we are manually draining him there could easily be saggy bits that are holding urine that we just can't empty...... And bacteria loves damp warm things to grow in.

It's encouraging to have a plan and we are paying that this will help keep Sam infection free.  We are also praying for a miracle and that his bladder will start to function again.  Naturally it's not expected, but we have seen enough of Gods goodness and unexpected miracles that we dare to ask, knowing He tan do immeasurably more than we could ever ask or imagine.

I've been staying in all week so am pretty tired, so am switching for the weekend again with Francis.  Maybe they can escape a few hours in between drugs and procedures, which would be lovely for all.

Thanks for your prayers and cares.
S

Saturday, September 6, 2014

A crazy 24 hours

Sam has had a great 4 days at kindy. Actually we were home for a whole week and he was doing great. His walking was very stilted and penguin like after 17 days of inactivity, but he was determined to charge around with his friends at kindergarten and was climbing up and sliding down the firemans pole as soon as he could.
Yesterday at lunch time his urine looked a bit cloudy, then by 7 at night he had a temp. He had a high temp and sludge for urine overnight and I brought him in to the emergency dept this morning.  He has been in and out of theatre and now has an IDC inserted - an indwelling catheter. He has started abx and is now on 24/7 bladder wash outs.

This  time he got sick really fast - he is miserable and still having temps etc.  I found it upsetting as people say things, that when I have had sleep I don't mind, but after being up most of last night they hurt today.  Flippant comments about me being 'tough' upset me today.  It wasn't said in a complementary way, but implying I was a cold mother.  If they saw me holding back tears as I held him so tight as he fought me screaming 'don't take me in to surgery... No Mum!'. What good is it for anyone at that point if I wasn't tough? He had to have it done - it doesn't mean it doesn't crush my heart.

Tonight there was another incident with Sams care and that upset me.  I wish I didn't have the burden of his care, but when systems and people fail him on a much too frequent basis, I am here to protect him.  On one hand I am so glad  I felt to double check and a terrible scenario was avoided, but I find it so distressing that is so often the case and I wish I had a reason to trust..... But I don't because I can't, because Sam has enough to contend with without having avoidable human errors dumped upon his already struggling system.

I wish I had something lovely and cheerful to write, but tonight I disappoint both me and you on that front.  I wish we were home as a family and that my darling boy was with us.

Oh one lovely thing happened today as an orderly was wheeling Sams bed to theatre.  He was a gentle giant and he hi fived Sam and then put his hand on his head and asked Gods peace on his life.  It was a lovely human touch and a supernatural reminder that actually I don't carry the burden of care for Sam but the loving God that I can totally trust does.

Please pray for Sam - this is the first time in a long time that I have seen him so unwell.

X

Thursday, August 28, 2014

We are Family!!

As we sat around our table tonight, all 5 of us, it was loud and fun and did my heart good!

Sam got home around 4pm, with Ange - his trusty carer/teacher/nurse/friend/second Mum.  She is truly a total God Send to us, as she hangs with Sam in hospital (when I'm not needed) or takes him to kindergarten (with her Ministry of Ed Teacher Aid hat on).  She is a remarkable woman and Sam adores her...... although when I got back to hospital the last couple of afternoons, the first thing Sam said on both days in a hushed voice and serious face was, 'I told Ange to shut up..' and he was staring intently at me to see what I would do!  The last few days in hospital were taxing as he was over it and had all manner of tantrums, screaming fits, throwing his cars across the room etc..... so I'm sure it is a mutual joy to the staff on Sams ward that we got out!  He has so much done to him, so much interference in his private space and so little choice or control, so we are seeing behaviour typical of high health need kids - they take back a semblance of normality by controlling what they can - their room!  So it's all normal, but challenging.

He spent his first 2 hours at home going crazy!  He was so excited he was running around, wrestling us, then next minute he's dressed up like a sailor in a hat calling orders to fly the flag, then he's squealing with delight as he's running up and down the hall.  It was like he had 2.5 weeks of pent up bed-sitting to get out - and combine that with the girls in hysterics with him and it was quite a cacophony which two tired parents could have done without - I rather fancied a cup of tea by the fire in the quiet... but then we're not 70 (altho' actually that is so what I wanted to do!), and it was too risky as Sam kept coming and leaping at/on me.

After he fell fast asleep in his own bed with his favourite blanket it was bliss to cuddle and chat with Candace then the same with Jasmine.

Then I had to get on and create his new medicine.  It is simple enough to do - break a tablet in half, crush it, add in 10 ml of water, mix then discard 5 mls, then draw up remaining 5 mls and pop in his J tube.  He is to have this morning and night in the hope that changing the acidity of his urine bacteria will find it harder to grow.  We also are doing a 15 minute bladder washout at noon and then a 1 hour washout at 4 - 5pm.  It doesn't sound much, but ontop of his usual cares, there will be more clock watching going on and we really want to do this well to give him a good shot of staying uti free for a long while.

It is a bit of a trial, but we are hoping and praying that it will impact greatly so that Sams quality of life is much better.

Ok, off to sleep.... in my own bed.... bliss
X

Monday, August 25, 2014

No plan.... Yes a plan... No plan... YES a plan!

So the teams yo-yo'd from Thursday to Friday, then we discover there is no plan.... so we wait in hospital over the weekend not very happy with not having a plan..... so our fabulous nurse advocate communicates to all and sundry that leaving our little boy sitting in a bed forgotten (that's what it felt like!) wasn't an option... so today she met with various important people and we now have a plan!

In summary:
Surgery - not an option right now - nothing to be achieved, could make things worse.
Medicine - adding in an oral medicine that changes the acidity of the urine. To start today with ph testing of the urine to see if he is absorbing the medicine and it is doing the trick.
Practice - to implement bladder wash outs at 12 noon and 4 pm every day. Put in 70 - 100 ml of body temp saline, leave in situ for 15 - 30 mins then drain out.

If the above is done it may keep bacteria at bay. If it doesn't work we also now have a plan for when he needs to be admitted to starship - I know, tis greedy to have 2 plans, but hey ho, we are pleased! If he gets unwell and needs admitting, he will quickly have a GA and a catheter inserted and 24/7 bladder irrigation to commence. Until this is done he will have hourly washouts and IV abx will be started. All of the above means that today Sam had his catheter taken out and he walked for the first time in 2 weeks. The new meds will hopefully work and we can head home Wed night/Thursday...... oh we do hope so!

Thanks for your prayers for our special boy. He's done well considering he's been stuck in a bed. I had a great weekend with the girls at home - great that we got time together but we had lots of tears and heart felt chats - it's not easy being the sibling of a sick kid..... it was special and important time with them both as they process their feelings and frustrations. Francis has stayed with Sam for last 4 nights as I just couldn't - was just so tired. But now I have good sleep under my belt and my cold is nearly at bay, tomorrow I will head back in to stay with my boy.

We are thankful for the plans and the skill and persistence of many many people and praying that the new regimes will help enhance his quality of life by keeping him at home!. X

Tuesday, August 19, 2014

The plan fast becoming vague...

Quick Update Thursday Night: Sam had bladder dye study - showed all liquid was contained in bladder and didn't leak anywhere it shouldn't. Surgeons meeting tomorrow to discuss where to from here. X Tis Tuesday 10 pm, Mickey Mouse clubhouse is on tv as Sam is wide awake with the nurse just having been in for her hourly checks, plus he had a big nap this afternoon to make up for his lousy nights sleep. I have been trying to teach Sam how to poke his tongue out - it just is a skill a small child should enjoy, but he isn't very good at it, probably because he has a weak tongue cos he doesn't eat (true!). If u r lucky u will get a photo of my attempts after my ramble, which is awash with frustration.

Yesterday gastro requested that the Surgical team take Sam over for this admission, as any further treatment was to be of a surgical nature - it makes sense.   We will continue with our nurse specialists, who are our point of reference no matter which team Sam is under.  Well it gets to 5pm and I mention to the nurse that we've not been visited by anyone all day - what is the plan? She talks to gastro, gastro chase surgical and at 6.10 pm a guy walks in in scrubs and says, 'when Sam goes tomoro for his cystoscope....' At this point I smile and interrupt him saying, 'Hello, I'm Shirley, Sams Mum - Who ARE you?' Seriously has he never seen the movie Patch Adams?  It's not 1950 anymore when Drs are brains on legs and people mere objects of the privilege of their skill lavished on the infirm!  Should it not be compulsory that every person in health care watches this great true story as part of their Professional Development? Anyway, once the forced niceties are laid to rest he explains that Sam is to have a trip to radiology tomorrow (today) where they will fill his bladder with dye and take photos under X-ray to see if the liquid leaks over into bowel etc. If it leaks out, it means that bugs can leak in and that would prove his source of constant infection. Seemed like a good plan, to which I said, 'what time was the procedure booked and would I need to sign consent?'  He said it had been booked but he had no idea what time and the radiology booking system is separate to Starship so no way of telling til the next day... But it would be sometime - hmmm, so not helpful when trying to plan 'life'.  Should I attempt to go to work?. What about collecting the girls from netball practice? What time should we attempt to bath Sam and could we launch into a big activity with him like painting or making something? The surgeon had no answers then left.  The nurse then advised that someone had written in the notes that he was booked in for an audiology review at 2pm today.  It was unclear who booked it or why and would it indeed clash with the X-ray appointment which no one had any idea of timing.  I'm outlining the above as this is the normal when living in here.  Our plans seem of zero consequence to those that have power over us by the fact they have what we need and we have no other means of obtaining it.  That statement relates to so many situations and people - to the 'have nots', those in warzones, minority groups, the sick, the vulnerable.  People here are very caring, but I'm conscious that the individual can get horribly lost amongst the bureucracy and systems.  I keep trying to change and work with the people here to improve things on a systems and practical level.  I'm also conscious that I can only really change me and my reactions and ideas.  This is why I keep writing this blog - as I write I think and I process and I learn.  I started tonight feeling resentful to the surgeon and his reaction, but as I have written, I am conscious that he was at the end of a long day, busy, tired and rushed. Now MY challenge is how do I interact with people when I become busy and rushed.  I need to be aware that whoever I am interacting with at the supermarket or at work is a person of great worth who has a name and has needs and is an integral part of a family that needs them. And I know I don't treat people that way.... wouldn't the world be different if I actually treated people how I expected to be treated... ouch!

Anyway, I went to work and the nurse was going to phone me once she had heard anymore so I could rush back in and be with Sam for his procedure.  Well at 10am I got a call saying that the X-Ray had been booked for Thursday at 10.30. I am glad I didn't sit in hospital waiting for nothing! The audiology review had been booked by ID as repeat use of strong antibiotics can cause hearing loss. I explained that the last audiology clinic was quite tough on Sam and that he wouldn't be able to attend with his pumps and drains in - totally impractical. So that has been put off to Friday.  ID make decisions without ever coming to see Sam - they look at blood results, chemistry and meds - had they seen Sam they would have seen how crazy it was to book him in for this - again the reminder that 'patients' are people is on the tip of my tongue - if I was to ever meet one of these 'ghost Doctors' as I have come to call them as I'm not sure they really exist, I will have a wee chat about the above.

Today Sam continued having his IV abx three times a day and is on continuous bladder washout. No one from the surgical team came to see us, so we are assuming to just continue as is until after Thursdays scope.  We don't know how long they want the bladder washout going, but while it is in Sam is bed bound and a bit uncomfortable. He has now been in bed 9 days, which means his muscles will be weakening and we are conscious of keeping bed sores at bay.

He is happy enough, bless him - he puts up with so much and is always so happy.  Today he did painting and puzzles and enjoyed himself.

I spoke to the girls today - 1 home from school with winter bugs and 1 at the Inter Schools cross country champs. Candace and Dad cooked tonight from the food bag that was delivered on Sunday night - the girls are loving cooking, albeit it easier than normal.

Tomorrow I will go to work and come back here so I can stay the night and be here for his X-ray appointment on Thurs, which I have just heard has been brought forward to 9am. Thursday night Francis gets to sleep here so I can see the girls and sleep without hourly night visitors and bells going off.  It seriously is so quiet and strange when I sleep at home - silence truly is golden!

I will try and leave you with a photo of a happy boy and his new found skill!
If you made it this far, thanks for listening to my ramblings X

Saturday, August 16, 2014

A Plan!

Sams chest has cleared nicely over the week, so he is now off oxygen and only needing ventolin randomly through the night to help him clear his chest.

Yesterday something very amazing happened - 4 specialists from 4 teams were in the same room discussing a plan for Sam - a urologist, Infectious Disease, Gastro and Paediatrician as well as our nurse specialist.  She made it clear that doing nothing about his ongoing uti's was an option, as Sams quality of life was definitely being affected.  It was decided to pop a catheter in his penis and to put him on a 48 hr continuous bladder washout.  A blood warming machine was brought up from theatres (used for heart ops), so the 100 mls of saline/ hr would be at body temp.  Yesterday they gave him medaz on the ward and tried to pop catheter in, but he needed stronger sedation.  So this morning he went to theatre to have a GA and catheter insertion.  As this isn't a common procedure it took about 5 hours to find the right attachments and nurses to be trained.  He will need to have hourly Bladder drainage checks for next 48 hours.

I am at home with girls - was so nice to have a sleep into own bed and to watch them play netball and hang out.  Francis is with Sam and tomorrow we will head up mid morning so we can hang as a family.

The plan is on Monday there will be another procedure - cystoscope - camera in bladder/urethra etc to see if they can can see anything that needs further action to hopefully find some resolution to these ongoing uti's.

We are relieved to have a plan and we hope and pray that we can find a longer term solution for Sam.

I leave you with a very cute photo of when Sam was on oxygen - you will be relieved to know bee has made a full recovery too and is no longer on oxygen - his bladder is fine.

X

Tuesday, August 12, 2014

A very sick little boy!

Normally the blog is quiet cos we've been too busy having family fun.... the past month it's been quiet cos we have been hectic with hospital admissions and back to back appointments. I write this from 26b with Sam lying beside me with oxygen prongs in his nose as he has a chest infection,  a double uti (both urinary tracts are sludge), and a quiet and run down little man.

Last week we had an unexpected Mon - Thurs admission for an ongoing uti, that just won't budge. We went home on Friday and had daily amikacyin infusions, but still his urine looks like cheese. But it was great to be at home for a few days as my sister and her family were up and we had lots of fun hanging out with them....

But Saturday his sniffle turned into a cold, then overnight at 2.30am I nearly threw him in the car and raced into hospital, but decided to try ventolin to see if that would alleviate his coughing, fast breathing and hard work.... and it did..... although he required 3 hourly ventolin.  Yesterday he got worse very quickly in the afternoon so we got into the Emergency Dept at 6.45pm, up to the ward around midnight and he had hourly ventolin.  He was not most pleased to have a mask put on his face every hour, so it was rugby holds from me getting hit and kicked in the process.... but he fell off to sleep each time saying, 'I love you Mum'.  And I love him dearly, which is why I rugby hold him willingly each hour as his lungs need it.  This morning he was on 2 litres of O2 and very tired.... I was on 2 litres of strong coffee and very tired.....

I went to work and Sam went to sleep - he had a 4 hour nap and woke much happier.  He is currently on 1 litre of O2, having ventolin 2 - 3 hourly and having abx for a uti that won't budge.

He has had a uti for the best part of 7 weeks now - only off abx for a couple of days before needing to be back on again.  Unfortunately it has now been decided that probably it is an anatomical issue so the surgical team are reviewing past ultrasounds and seeing if they can see anywhere there could be a pocket of pus lurking, or a partial kidney stone that is causing a partial blockage.  This could be why bacteria builds up, as the urine is passed slowly through a small gap and/or bacteria latching on to some residue.  Sam continually pushes down like he is trying to wee, but he isn't actually weeing due to his 2 manual drains.... so we are really hoping that the various teams can spot what the problem could be.  He has been on a strong antibiotic which the bugs should be sensitive to, but he sadly has become resistant so it's not having the desired effect.

There have been many days I was going to blog after some bizarre hospital escapade, but decided that my frustrated ramblings amidst fatigue were of zero benefit to anyone.

Today instead I am deciding to be thankful and her is a little list:  I am so thankful for a great boss that has employed me knowing that I will be unreliable; a fabulous work mate that picks up the pieces when said unreliability rears its ugly head; 2 fabulous daughters that performed at dance festivals last week amidst a hospital admission and then helped me load the car last night for another admission - all the while hugging and kissing their dear little bro whom they adore; for a fab friend that has booked me a foodbag for next week (5 meals show up in the form of ingredients and a recipe card); multiple other fab friends that are picking up and sorting the girls/meals and my wonderful husband who too is tired and puts up with me when my tiredness turns to grumpy in the luxury of home; for having access to medicine and skilled kind people for Sam; to be able to be a christian without fear of beheading like currently happening in Iraq; for fresh water to drink that I didn't have to walk 2 hours to find....and I could go on and on...   It is good for me to force myself to be thankful when so often I want to grump and moan - the frustrations are real and circumstances are out of my control but my reaction to them is totally in my hands.

Tomorrow Sam is due to have an ultrasound to try and spot anything in his plumbing - it is not going to be lovely for him, so I will be here to wrestle with him, knowing that the outcome of potential information to help him is worth the temporary discomfort of the procedure.  I wish I could apply these lessons so easily to my own life (exercise for eg!).

Anywho, I am needing some shut eye before the next ventolin attack.

Oh I funny saying from Sam.  We were talking about a friend that was pregnant.  Sam comments, 'I was in your tummy wasn't I Mum?'.  I said, 'Yes', then before I thought I said, 'How did you get out?'.  He thinks then says, 'I climbed up a ladder and out your mouth'.

And on that simple and neat take on life I leave you - may we all see the simple things in life and enjoy them.

X S