Wednesday, December 24, 2014

Christmas Eve

Oh so many changes in the past 24 hours - yes we will be in hospital for Christmas.... 50/50 chance as we have to wait and see... No you cant get home.... oh sorry Sam isn't responding to the meds so we have to increase them so you will be staying etc etc...

Then this morning our favourite urologist wandered in and was very decisive that the catheter could come out and we can can pop in tomorrow for his antibiotic 30 minute infusion, but he saw no reason we can't go home!  Woo hoo - we are all very delighted after resigning ourselves to another Starship Christmas.

Sam still has debris in his urine so they have increased his dose of IV antibiotic infusion.  At 4 this afternoon he will have a 'trough' - they take blood to check how the drug is affecting him, then he will be set up for his 30 minute infusion.  After that we will head home in time to hook him up for his overnight TPN!  

Right now as Sam plays with his cars on his hospital bed, Francis and the girls are at the movies enjoying 'Paddington' - well I'm guessing the girls are enjoying it and Francis is enjoying not being at work.  Tonight we will head to a 7pm Christmas Church service and tomorrow morning we aim to have a lie in (um... well anything is longer than the 4.30 am wakes up in this place due to pumps alarming etc), a lazy family brunch and gifts and then on to more food for a Davy Christmas lunch, with a pop in to Starship for Sams infusion at 3pm.  We have to have a nurse visit from Boxing Day until Dec 30 for an infusion, but this is the pay off to keep us out of hospital. 

Every year the girls groan and roll their eyes when they are asking me what I want for Christmas - my answer is always the same, 'I don't want anything but to have the 5 of us together - the people I love the most'.  They now parrot it back at me, but this year I truly mean it more than ever!

John 3:16 'For God so loved the world He gave His only Son, so that none would be lost but have eternal life'..... This is what we celebrate at Christmas and my heart is full as I think on that amazing truth... and whether in Starship or home, that truth is the same.  We are grateful that we will all wake in the same place tomorrow as we stoop and celebrate all that God has done in giving Jesus to walk alongside us in this life.  

It has been a hard year on lots of fronts - disappointing surgeries that didn't work, lots of long hospital stays, Francis' Dad has been very unwell and the challenge of work/life balance has been hard (& I failed miserably) amidst a busy family. So we crawl to Christmas weary and a bit jaded. We look forward to time to stop and breath and enjoy each other and to take stock and ensure we do what we can to make positive changes.  I hope to disappear for a few days to sleep and leave Francis with the kids - I am so looking forward to this!!

I hope this holiday season you can look back at the highs and lows, spend time being refreshed with good relationships and lots of laughter, ready for the challenges of 2015.

Thank you for your care and prayers for Sam and us - X Shirl

Sunday, December 21, 2014

A Christmas glitch....

Last night Sam giggled his way through our Davy Christmas party with 20 people present, cousins, food and much crazy-i-ness.

Then he had a really rough night with high temps and vomiting.  We thought it was his urine infection kicking off, but both urines are clear and I have an inkling it is something different/more serious.... so sadly he is sitting in Starship Emergency Department waiting to be seen.

Girls are disappointed as they anticipate another hospital Christmas, I'm so tired after a crazy few months that Francis has taken him in so I can sleep this afternoon.  I will be swapping with Francis at 8am tomorrow so he can go to work - he finishes work on Wednesday before a 2 week break.

So the tree is up, the Christmas music has been playing, but it's about to be turned off so I can 'nana nap'.  The girls are so good at reading/hanging out and being ignored that I should get in a couple of hours.  I hope by the time I awake there is some news as to the source of the infection and a treatment plan..... but it is Sunday (read skeleton staff on at Starship) so all will be revealed in due course.

I don't like seeing Sam so hot and then he gets really babbly and slightly delirious.... dear boy, his life is not easy, wish I could make it easier for him.

X

Tuesday, December 16, 2014

Graduation!

Sam got home on Tuesday evening, after an iron infusion and a new plan around his central line care.  We now put this little disk (which is impregnated with something to kill bugs) at the entry point and then use a 'second skin'.  These dressings are amazing and are so thin but stick like glue.

So he woke up on Wednesday at home, which meant he could go to his Kindergarten Christmas party and graduation!  He was such a star - he was shepherd and managed to stay focused and do the right things for the duration - no mean feat when there are around 100 kids in various stages of nativity dress-up with a medley of songs.  It was truly a delight to see them all in action and I felt quite emotional as he 'graduated'.  Such a milestone for our little man and we are so indebted to the love and care of the team at Elim Kindergarten who have nurtured and loved Sam.

I'm afraid the photos aren't great as I forgot my camera and only had my iphone. He is the cute shepherd in the middle!

He has been doing great at home, until Saturday when his urine turned to custard, so we popped into Starship with a spec on Saturday.  He has grown an e-coli, but they are unsure which strain, so we are monitoring symptoms with extra bladder wash-outs and daily gentamycin bladder wash outs too.  It does sound so boring as I read what I write.... just more of the same, but we value your prayers and hope that with info you can understand a little.

Again this year he is not in love with the large white bearded fellow, so won't be any cute pics of him with Santa any time soon.  I may try to record his screaming for you!  

He is going to have another trial morning at school, before school closes on Thursday.

I leave you with his 'graduation' photo - on the last day of school the child is presented with their graduation cap, which he wore with such pride all day!  So he is off on another adventure next year - to a big school, with Ange his faithful carer moving on with him as his Teacher Aide. She truly is a God send and a very dear woman that has become a part of our family and especially Sams life.

10 days to go before we celebrate the coming of Jesus -we are loving the season and the reason and enjoying being home doing simple things.  May you all be able to relax and breath and enjoy some quiet this Christmas.


Saturday, December 6, 2014

A Crazy Month

So it is Saturday evening, Dec 6 and our family is scattered far and wide. Sam was admitted to Starship on Wednesday due to a weird angry area around his central line (see pic)


It just appeared on Monday as a pink area and then got worse and so I sent off this photo to Starship and we got the call to come in.  Sam has been totally well and happy with no other clinical symptoms.  He was started on IV Abx and as of today it looks like it is starting to improve.  Sam was at school for his first morning visit, as he is starting school next year.  Get a load of the cuteness in his school uniform:
He was so proud of his uniform and when asked in Starship by his consultant what the H stood for, he said, 'H is for Handsome... long stick, long stick, twig!'.   He doesn't go to Handsome school, but Howick Primary School and if you get your finger and draw a 'long stick', then another 'long stick' in the air, joining them with a 'twig' you will see that he had soaked up his letter of the day and loved learning.

He was so happy to be showing his uniform off to all the staff at Starship.  It is no small miracle that he is wearing a school uniform and tears of thankfulness brim in my eyes just thinking about that.   

Sadly with him in hospital, I was with him during the week and Francis is with him for the weekend. He could have escaped for a few hours today but I woke with vomitting and have been bed bound today and the girls have kindly been whisked away by friends to have a last minute planned fun weekend.  

So I am home alone and it is very quiet...... and lovely!

On Thursday evening we left Sam in hospital with Uncle Eddie having a 'boys night', and we went to our girls prize giving.  We are so proud of our girls - it was a real delight to see them both receive awards this year.  Jasmine won the year 8 Public Speaking Cup and Candace won the Year 6 Trophy. Jasmine wrote her speech totally on her own back in August when we were in the midst of a hospital admission.  Often our hearts have ached at how we don't give the girls the time we would like to due to Sam, so it was a precious moment to see that they have done so well amongst a really tough year. We know that Sam is in the hands of his maker and on Thursday we were reminded again that the girls too have been looked after by God this year.  We are so grateful to the Elim School community that has watched out for them, that have been aware of their situation and for the many dear families that have loved and looked out for them and enabled them to flourish.  

Sam is to be reviewed again on Monday, but they are being very cautious about this as it's a strange thing that hasn't happened before.  The various swabs that have been sent to the lab have grown nothing of consequence, so in having a big change like this with unexplained cause, people are nervous to let us go home.  Sam has his Kindergarten prize giving on Wed and his last day on Thursday, so we really want to get him out for these celebrations.

We are all tired and weary from a busy few weeks, from Francis working abroad (been in Israel and Australia last few weeks), from me working (have loved being in a different stimulating environment) and hospital dropped in to the mix.  The last 6 weeks Sam has been at home has been lovely, albeit with one UTI that required IV abx for 7 days.  It's great to be able to do the meds at home, but it does put pressure on as have to watch the clock and keep to a tight schedule.  The alternative is hospital, so we work hard at keeping him at home, but it takes its toll on tiredness.

Summer is the hardest time of year - long days of sun and bbq's, but we have to stick to Sams regime and that is getting harder as he wants to be a part of running around and doing things, but we still have to fit in 14 and 16 hours of having him hooked up - there is no flexibility, so just deciding to do a family picnic or pop to the beach is out of the question.  Winter is easier because the weather is grotty and sitting at home with a DVD on is easier for keeping Sam (& girls) happy and his cares ticking over.  We are thinking about buying a caravan, so that we could have some flexibility to get away, if even just for a couple of days at a time - to have all of Sams supplies set up, with a fridge available is the only safe way for getting away..... so we are trawling Trade Me and trying to figure out how to make the most of the coming summer.

I leave you with a humourous story that, if you are having a down day, may just make you feel better about yourself!
A couple of weeks ago on a Sunday morning, I took the kids to church (Francis was in Israel).  10 mins into the service and the guy up the front said, 'turn around and say hi to those sitting around you and make some new friends'.  At this point the lady behind me taps me on the shoulder and says through a beaming smile, 'Oh it does warm my heart when I see Grandparents bringing their grand children to church - how old is your grandson?'.  I have to admit I was rather stunned/horrified/aghast at this and spluttered (possibly too vehemently), 'He is my son!'.  She may not have heard me over the laughter of my daughters!  I have to admit I have since purchased a new large tub of anti-aging eye cream, but I fear it is all a bit late - but I'm not going to give up to 'age' without a fight!

I leave you with a photo of Sam and his best buddy Caleb - he came for a play date and they were so cute!


Thanks for your thoughts and prayers,
X Gran!


Sunday, November 2, 2014

A Good Silence this time....

Sam has been so well and happy since we have been home this time - the longer course of hard core antibiotics really dealt to the bugs in his urine, so we are enjoying having clean urine and a very happy boy.  From those that I talk to that have had the sorrow of UTIs themselves, they all comment how awful they feel with them.... so its no wonder Sam is leaping about giggling and so happy - I think he must be feeling so well after 6 months of fighting uti's.

He is loving Kindergarten and being really active - wanting to climb and jump and in to everything.

Last week I had meetings with Ministry of Education about getting the school physically ready for him to start.  We are hoping that a space is ready by February when we intend him to start school.  If it isn't, he won't be able to stay at school beyond a 3 hour period, as he needs a dignified, clean and safe place to have his cares done.... so we are hoping the very slow cogs that bureaucracy seems to use, may hopefully speed up beyond the historically snails pace at which they grind.  

We also had a respiratory outpatients clinic at Starship, which was just a catch up after a winter where he needed added oxygen at various times.  He had some scans done 3 weeks ago when he was well, and it seems to show all that we had suspected.  He has a piece of damaged lung (which is always the bit that collapses) and his air way and other parts of a lung have scar tissue (from previous infections).  But as he bounded into the appointment, stripped off his clothes to show the Dr his new undies (he is out of nappies now so he is very very proud of his new status) you wouldn't have known anything was wrong.  When all is well he is charging around, but when he becomes unwell, due to this damage he quickly needs assistance.  

But for today a happy boy went to sleep to his usual song - every night before sleep he makes me sing the song I have sung over him every night since he was born... and now he lies with his eyes shut and smiling as I sing it... sometimes he joins in which is very cute.... it is Numbers 6:24-26
24 “‘“The Lord bless you
    and keep you;
25 the Lord make his face shine on you
    and be gracious to you;
26 the Lord turn his face toward you
    and give you peace.

That is our prayer for him, for Jaz & Candace..... and may it be so for you too.  X S

Tuesday, October 21, 2014

Champagne not apple juice

The colour of urine should be light like champagne, not dark like apple juice..... Am pleased to say that after 5 days home Sam has champagne coloured urine, without any debris in it. At 3pm I gave him his last dose of IV abx, both urine samples look great and Sam has had a fab 5 days charging around.

We now embark on a week of nightly gentamicin infusions to sit in Sams bladder for ten minutes, and twice daily bladder washouts.  We really hope and pray that we are able to keep his uti's away - we would love him to have a long stint at home.

He physically is getting really strong and he doesn't walk but jogs/shuffles/rushes everywhere. He also shouts and talks non stop.... We are working on the 'inside voice' technique at the moment... He has a ways to go.

No matter where he is shuffling or shouting you just can't help but smile - he is a delight and brings so much laughter into our house.

Oh his great achievement this week is he has finally decided to wear big boys undies! Due to ops/ incontinence etc he has been in nappies, but as all his outputs come out interesting places he can stay dry and clean as he can't be toilet trained.  So he is delighted to tell all and sundry of his achievement - sometimes he feels a visual aid might help understanding, so we are also training him as to what is appropriate!

I took a call on Friday afternoon from the Herald newspaper, telling of their delight that they had reached their target of raising $150,000 for Starship.  People are so kind and generous. Thank you NZ for caring.

X.

Wednesday, October 15, 2014

The link from the Herald article...

This is the link to the article that we were involved in for a fundraising campaign for a surgical theatre upgrade here at Starship.... I'm not so technical, but if you copy and paste it you will get to see some cute photos of Sam looking really happy.... but then he is - he loves hanging out here - his mother, not so much!

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11333059

Term 4 begins....

Yes we made it through the 2 week school holidays.  I always struggle with holidays, as you don't ever get a holiday from a chronic condition and the girls want to be doing fun stuff.  So the first week saw us doing lots of practical things (hair cuts, Doctor appointments, dentist, ortho and Starship outpatients for Sam).  The second week the girls went to Camp Raglan and had a totally fabulous time.  150 kids, being kids in the most beautiful camp site you ever did see.  Perched on a cliff top overlooking the beach, the girls embarked on 7 days of adventures - hot pools and water slides, quad biking, paint balling,confidence courses, challenges, bonfires and more!  We are so glad they got to be kids and try new things.

Meanwhile home on the ranch, we ended up moving back into Starship on Monday morning, as a uti was brewing again.  Monday afternoon was back to theatre for an IDC insertion (In Dwelling Catheter) so he could be on 24 hour bladder washouts.  On Wednesday Mum popped in, enroute from Invercargill to China.  So her 10 hour layover in Auckland was sitting in a small hospital room in Starship.  Not the most thrilling of events for her, but it meant I did get to read a Southland Times and Gore Ensign.

We also had lovely visits from friends (Susans cardboard coffee carrier became a garage!) and Tanya and her kids entertained Sam on another day whilst I escaped to find coffee.  Sam loves visitors and it was lovely to catch up with friends and break the tedium that is hospital.  There was also an influx of patients and families that we know, so it was a bit of a reunion.

We got home on Thursday evening, on the proviso that we have daily visits by the home care team for an antibiotic infusion.  These duly happened on Fri, Sat and Sunday...... by which time it was clear that the meds really weren't dealing to the bugs, as his urine was still full of a lot of debris..... but Sam was very happy to head back to kindy on Monday, Monday night his urine had deteriorated again, then yesterday he coped with kindy but when I popped in at lunchtime to do his bladder washout he was holding his crutch saying it was sore..... .. so we did what we had to do and after bundling the girls off to netball after school, I got to CED around 5.... and up to our room on 26b about 10.

He started on the harder abx last night and he will be having 3 x day Merepenum.  It is only a push med, so it doesn't require a long time pump infusion, so I have already murmured (ok, suggested strongly) that I could manage that at home myself... so we shall see this morning who is on (ie, who can I persuade to help me escape) and what the plan is.

Ok, so all of the above is very dull - sorry, not feeling inspired as it is 5 am and I have been awake since 4 when Sams drain came out.  Sometimes I fall back to sleep.... sometimes I can't... so I gave up the fight and thought I'd write boring instead....and you're all wishing I had just tried to sleep - how rude of you!

Ok, off to get a shower before everyone else wakes up and there is a queue... I need to get dressed and make up on, so I can be on my best persuasive game when the Docs do their rounds - definitely better than trying to convince them to leave Sam in my care at home when I am bedragged in my PJs and have bed hair..... ok, TMI... I get it... rambling over...

Ohhh, actually I just remembered to say that Francis' work buddies set up a roster for meals.... it's been SO amazing to have the kind and very practical help of a delicious meal once a week.  The excitement as we open the bag to discover what we get to eat - it's like Christmas once a week!  Truly is such an encouragement and is great to sit around a family meal that has been stress free.... and easily far more delicious that what I would have prepared.

Right... really am going....

Hoping you are all doing ok. XX

Monday, September 29, 2014

A New Week

Day one of school holidays and we are enjoying no clock watching and doing unexciting things like grocery shopping and digging in the garden.

Today NZ Herald started a fundraising campaign for Starship Children's Hospital to upgrade tired aging operating theaters.  We were interviewed a few weeks ago  and a photographer popped in to capture the boy in action.

The finished article is in the paper today and online - slightly different articles.

Today Sam is dancing around the living room and jumping on Jasmine and being an annoying little brother for Candace - so he's all very normal really!

We have hospital outpatients on Thursday for surgical and gastro. His uti is still festering so we continue to do 4 hour bladder washouts, which are keeping the sludge minimal, but not eradicating it..... If it buys us time and he is well we will continue on!

X
Check out www.nzherald.co.nz .... I don't have the link, I guess u just search on Starship or Samuel Davy or Tired old mother might do it....

Thursday, September 25, 2014

Juggling ... Badly as dropping balls!

So we got home a week ago on Monday. I should have blogged but just doesn't seem enough time in between sorting kids, bladder washouts, cooking dinner and working..... But one week on and we are all still at home.  Sam has a uti again, which flared it's ugly head yesterday.  We are managing him at home with more frequent bladder washouts and have introduced a,topical antibiotic bladder wash. This is the same IV med that he sometimes gets in his IV line, but this time I am diluting it into warmed saline and injecting it into his bladder.  Once in I pull out the tube and leave it to hopefully clean out bacteria and then he is drained in 4 hours time.

Today he had a Ministey of Ed review at kindy and I also had a chat re hours of care that he is eligible for.  Needless to say the care he requires isn't fundable as he is an anomaly and that means that sorting it out is time consuming and stressful and I would find eating bark more enjoyable than the ongoing battles and conversations/paperwork that it takes to  educate people that round pegs don't fit in square holes.

I wrote the above yesterday .... 24 hours later and a couple of phone calls and now we have Sams funding for a teaching assistant sorted for next term - phewf!

Today is now Thursday. Sam had his last day today at kindy for Term 3, my last day of work is tomorrow as is the girls schooling, as the 2 week spring break rolls in.  We plan to do as little as possible - but our deepest desire is to stay out of Starship for the holidays. At this stage it's 50/50 as his urine has cleared a bit, but not totally. We will keep doing the washouts and tomorrow I will talk with Starship and we will make a plan. We are hoping it involves home based treatment!

The girls are so excited to be going to Camp Raglan for the second week of the holidays.  Camps are such a fabulous part of my childhood memories and secretly I wish I could go with them and do the confidence courses, kayaking, paint balling and all other things fun! But I will stay at home and I have booked a nurse to hang out with Sam for a couple of days so I can hopefully chill.  We are weary - it's been a long winter and this mother is definitely finding it harder to recover from hospital stays and sleepless nights than I did 10 or 5 or even 2 years ago!

Hoping you and yours are doing well.
X

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

Sunday, July 20, 2014

Term 3 tomorrow!

So kindergarten and school starts again tomorrow - the holidays are over!  The highlight of our holidays was definitely being at home together for Francis' birthday - no huge event, just special family times together around the dining table..... aahhh, so simple, so lovely!

But Sam didn't have an easy week - another UTI has flared its ugly head, so Friday saw me dashing into Starship with specimens and picking up antibiotics.  It seems to be clearing so he is perking up and been running around fine!

Tomorrow we will embark on another busy school term, with Sam heading back to kindergarten, after an 8 week absence... over half the term he missed, and he has been talking about his buddies a lot... so I know he will be full of hugs and energy tomorrow - here is hoping he does what he is told!   6 weeks in hospital, with sole command of the tv remote etc means we have a lot of re-programming when he gets home.  One night in hospital he was so angry with me that I wouldn't put the tv on (it was about 10 pm), he said, 'right, I'm going to call my nurse!' - so he rang the bell (I didn't know he had that sussed!) and in came the nurse. When he told her of his ailment ('Mum won't let me watch tv!), through smiling eyes she reprimanded him and supported me all the way!  It is 'cute' when you have these isolated incidents or its someone elses child, but when it is 6 weeks of accumulative 'the world revolves around me' mentality, our home can resemble a battle zone for a few days after discharge as we teach him he is now part of Team Davy and there is no I in team!

So kindergarten may be a challenge for him this week, as he has to follow set rules and tasks at allocated times.... but they are simply the most amazing team of capable and caring teachers that I worry not one bit that they can't handle the raving emotions of Mr 5!

Our girls have done great over the break - just hanging out with us, changing plans constantly.... we are so very proud of them and it's lovely to see them growing up (& my clothes that are uncool on me, suddenly are ok on them?!).

Sams super cute quote of the night was when I was tubing him up for the night and we were chatting about kindergarten tomorrow.  Sam hasn't seen Ange in 2 weeks and he said, 'Will MY carer Ange come tomorrow?'. To which I said 'yes'.  To which Sam sighed and said, 'Ahh, I do love MY Ange'.  Was simply gorgeous!

We are hoping and praying that this term will see Sam having a settled period of good health.... that would just be nice.  We love to hear what you are all up to - our world can become very narrow purely due to coping and time constraints in catching up... but if you have our email, we would love to hear about you and yours!

X S

Sunday, July 13, 2014

Guess where we are.

And it isn't home.  I have tried to write this blog twice but the hospital wifi keeps dropping out... Third time lucky?

So a quick review:
Monday - Sam had GJ put back in under GA
Tuesday - We got home about 2
Tuesday - had to drive back to hospital to get home pump (incompatible systems such a pain!) and home about 7.
Wednesday - Candace had surgery on her ankle to take pins out from her break a year ago. Just a minor day surgery, but a few quiet days of hobbling and pain relief.
Thursday - watching Sam with a hunch that something is brewing.
Thursday night - Sam wakes every hour or more to vomit and had diarrhea 
Friday - welcome back to Starship! He has lost nearly a kg in 2 days... Hooked up to IV fluids and IV abx. Happy as a happy thing!
Saturday - Aunty Tors pops in to hang with Sam for the afternoon, followed by Uncle E and R.... So I had a lovely afternoon at home with Francis and the girls. We lit the fire and had a game of Settlers of Catan, followed by meatballs and spag (also made by Aunty T) - was precious family time which has been rare these past 6 weeks.... Made all the sweeter cos I won the game!!!!

It's another birthday in our family this week - Tuesday is Francis birthday and we are hoping that we might get one out of 5 birthdays at home together..... But it could be Sams secret goal to be in hospital for all the family birthdays this year.... Either way it will happen, we will celebrate and we will make a way to all be together even if just to blow out some candles.

NZ has been lashed by storms this past week, but today the sun has broken through, well in my spot in Starship it is streaming in the window.  Yet up north thousands of homes are dealing with a big clean up, broken homes and no electricity.  Often people comment on how they see our life as hard - I don't agree - I think everyone's life is hard. Everyone has the unexpected, the disappointments, the highs and lows to walk through......many live with war, famine, in refugee camps, orphaned due to aids and conflict. Others live with private challenges but we look at them and judge they are fine because of their appearance or wealth.  We read as a family, as we slurped our spaghetti last night, Jeremiah 32 v 27 'I am The Lord, the God of all mankind. Is anything too hard for me?' We know the answer is No - He has proved it too many times - not by zapping our situation and making it lovely, but by giving us what we need - and often so much more, to keep going.

This is the day that The Lord has made, we will rejoice and be glad in it.  Not happy for the situation, but glad that nothing is too hard for God.

Enjoy your Sunday x x

Sunday, July 6, 2014

So Close... yet So Far!

So yesterday Sam was discharged for home at around 1.30 pm. His nurse called me at that time to say that Francis and Sam had just left the ward, and she then proceeded to talk through his change in medicines, his fluid regime etc... The call took about 10 minutes, then I hung off. About 2 mins later I get a call on my mobile from Francis saying, 'oh no, it's a disaster!'. The long and the short of it was that as Francis was lifting Sam out of his buggy to put him in the car seat, his GJ tube got caught on the buggy strap and pulled out. This was indeed a disaster, and he quickly returned to the ward and was readmitted! The gastric hole of course meant that gastric fluids were flooding down Sams tummy and on to his legs and he urgently needed to have another tube inserted. BUT it was Saturday and there are no radiologists available to put the GJ tube back in (it has to be done under live xray), so we have sat festering in Starship waiting til Monday morning, when we hope Sam can have his GJ re sited. Currently he just has a standard G tube in, which can only be used to drain his tummy - we need the J put in (which feeds down into the small colon) so we can give him nutrition and medicine. His GJ tube gives him around 30% of his nutrition (a milk type formula), so he has had to have this extra fluid given to him intravenously. As Sam was due to come home, his TPN had been ordered to be made up for the home system (remember our home pump and TPN is incompatible with the hospital pumps/system!), so I had to race in yesterday afternoon with the home pump or else Sam wasn't going to have his normal IV nutrition. So it's been a frustrating and disappointing weekend. Normally when Sam has his GJ tube changed, the radiologist threads a wire into the current tube, pulls off the old tube and feeds the new tube in over the wire. This way can mean it's simple and straight forward and around a 30 minute procedure. Historically due to Sams unusual anatomy, it has been really hard to feed the tube in and had to book in surgical time so he can have it put it while unconscious. We really hope and pray that it can be put back simply and easily tomorrow..... cos we'd really like to get in the car and leave! Tomorrow is day one of the school holidays and it would be lovely to be home with our girls and boy under one roof! Day 35 tomorrow.... we'd really like to wake up Day 40 at home. X

Sunday, June 29, 2014

Day 27.....

... And we are still in. His temp spike was the start of a UYI, so IV abx were started. He seemed to respond well and I did all the training so I could take him home and administer the drugs myself...... We we're all packed up last Monday evening ready for an early departure on Tues. On Tuesday morning at about 4 am I was up helping Sam out with a vomit when I saw his bulging poop bag .... Full of suspiciously awful looking goop.... So it was emptied and filled up in another hour... And at that point I knew we weren't going anywhere! Samples were sent but it hasn't come back with any culprit (C diff or Rotovirus etc) .... And it isn't clear why he is having such high losses. So we are still in, although we did escape for a few hours today to Aunty Tors house for a fun family Mexican themed meal and afternoon. He really enjoyed getting out and the girls loved seeing their bro. The week ahead sees us turning into parents of a teenager! Jasmine is excited about Wed but also anxious about what her birthday week will look like and which parent will be around for it. We always try to make a big deal about their birthdays as they put up with so much chaos and we are so proud of them.... So we will be trying extra hard this week to juggle hospital and making sure that Jas is made to feel extra special and loved on her special day. Hopefully tomorrow there will be a chance to put a plan in place to head home - school holidays start in a week and it would be so nice to be home together for that. But for now it is Sams gradual and consistent weight loss and delicate fluid balance that is keeping us in. He enjoys daily excursions to the ward playroom and we can get him painting if the 'paintbrush' is a car! He wheels the car through the paint and onto the paper and lo and behold it's called art. I might list it on trade me and see if we can make some money ..... Now u can tell we have been in here too long.

Thursday, June 19, 2014

To the pentouse

So it is 15 days post op and Sam is still in. The surgeons are happy that all is well and nothing more needs their input for now, so we moved from surgical ward up to the gastro ward -26b. We happen to have scored an ensuite (I can't find the complimentary bar tho!). Although the surgery has fixed Sams large tum, his small bowel needs to recover from the stress it's had over the past two months. It has been cooperation nicely and is now tolerating 23 ml/hr of milk feeds. Feeds are being increased 3 mls every 12 hrs. In the last 48 hrs we have been pleased to see his ilieostomy outputs are now looking and smelling like faecal matter and not just liquid. His gastro outputs are still too high and variable to consider heading home, but the H word has been murmured for possibly early next week - well that was mentioned at 5 pm today, but it is now 9.45 pm and we await the on-all Dr as Sam has just spiked a 39+ temp 😓😳😥😪😩 - That is 5 distressed icons representing 5 Davy's who are really wanting to all be together again. Hopefully whatever is brewing can be found and treated quickly.

Off to hold my boys hand and rub his tum - I will remind him of this when I am old and frail and roles are reversed - he doesn't owe me a thing, but I am sure it will bring me as much pleasure then as now. X S

Sunday, June 8, 2014

i AM 5!

Yes Sam is 5!  He had a quiet subdued day, due to being less than 48  hours post op... but he was loved and spoilt by the care team and had lots of visitors!  He had a play dough racing car cake and his room was filled with balloons and streamers.

The surgeons are really pleased they have given him back his ilieostomy as the large bowel was full of festering gluggy bile that was not going anywhere - hence his large round tum and very little excrement making its way out. He now looks so skinny without his bulbous girth!  The small bowel was not looking damaged as they thought it may have been - which is a real plus.  As I write he is now about 24 hours into GJ feeds - I think he is up to 15 mls/hr and every 12 hours they are increasing this by 2 mls.  So this is really good news, as it means we can hopefully start decreasing his TPN shortly, which means his liver can take a bit of a break!

His pain has been well managed, but the part of his lung that always seems to become compromised post anaesthetic has collapsed again and he is still on oxygen, having chest physio input and on IV antibiotics as he was spiking some temps.  It seems the team got onto this early with xrays on Friday that confirmed this.

He is tired - having big naps each afternoon, but now he is back to his warm loving funny self, albeit with lots of wires and tubes!  Francis has been with Sam all week so I could be with the girls sorting their birthday/school needs etc.  It's worked well, but with the new week ahead in hospital some more creative logistics required to keep us all afloat.  Jas is off to a week long sports camp tomorrow, so she is very excited about that!  I leave you with some photos of our big birthday and surgery week ... oh and he got a few more cars for his birthday, so he is most pleased!  A girl can never have enough shoes, A Sam can never have enough cars!



Saturday, May 31, 2014

A Crazy Week Ahead

On June 3 Candace will wake excited and ready for her 11th birthday!

On June 3 Samuel will attend kindergarten for the day then head into Starship for admission to the surgical ward at 4pm.

On June 4 Sam will have surgery to reinstate his ilieostomy bag, aka his poop bag.

On June 5 we will have a family birthday party for Sam in hospital after school because on ...

June 6 Sam will have his 5th birthday.... In Starship 🎂

On June 6 Candace will have her birthday party at home with 5 little friends.

Sam is telling people he is getting his poop bag back and he understands he is to have another surgery. The timing is unfortunate but if not this coming week it would have to be delayed until August, so this is best for Sam and his overall well being.

Candace has mostly had chaotic birthdays since Sams arrival, and this year they were to have a combined party - her idea as she adores Sam. As he will be in hospital the party will happen without Sam, and means Candace can be celebrated on her own.

Although this week has a surgery in store and the sadness and tension that brings, we are truly amazed to have a five year old Sam in our family.  He is one amazing little guy that we love to bits, he brings so much joy and pleasure to us and we hope and pray for great progress for him in his new year.

I have a zillion things on my 'to do' list so must head off to start them.

We would love your prayers for Sams surgery on Wednesday.  Often bugs are stirred up by the surgery and he can have a rough time post op with bacterial infections and pneumonia type symptoms after an aesthetic, so we would love for this surgery to be straight forward so that his 5th birthday on Friday can be almost fun for the wee guy.

X

Monday, May 19, 2014

I don't know why.....

... last week felt like a tough week. Nothing bad happened, we didn't have a Starship sudden visit and Sam was happy. I think it was because Sam is about to be 5 - June 6, he will turn 5.... and everyone is so excited about that.... 5 is such a defining age in NZ - it's when you normally start school and life seems to begin with a vengeance. Normally you're excited about making the birthday cake and getting things ready for the big day.... but last week I spent it writing reports with my case worker about all the things he can't do, so we can get funding for an assistant at school. Last week we found out that the last operation hasn't worked and it needs to be reversed... he's going to have a poop bag again - another surgery - another physical assault on my darlings already scar ridden body..... as I lay beside his bed listening to the pumps whirring in the night I just felt so sad that my wee boy has to be hooked up every night and the abnormality of it all just flooded in. Normally I find it cute and endearing when my little boy asks me if I am going to do the blue or the black kidney drain first.... last week it made me cry and I was deeply sad that I have to stick tubes into him every 3 hours to drain his kidneys - it didn't seem cute anymore.... As parents we try not to compare our kids, but who are we kidding - we all do it....'look how tall little Johnny is now!', 'Didn't so and so do well in the talent show', 'gosh she's an amazing pianist for her age' etc etc.... With school on the horizon (Albeit a rather late horizon as we wont be sending him to school for a term or two), all the things he can't do are becoming amplified. He won't be able to join in with any swimming as he can't get submerged due to his central line. He will need assistance to get from A - B and to take part in any physical activity... he will need a safe and dignified place so we can take his clothes off to do his drains etc... he doesn't eat lunch or play lunch.... blah blah... At this point I must say that the sadness is mine - so not Sams. I'm not depressed or feeling negative,I'm just being real - I'm not always chirpy and sometimes I feel overwhelmed. Last week was one of those weeks. I think too some comments that wouldn't normally affect me, did. One woman asked me eagerly, 'how is Sam, did he start eating this week?'. Normally I would just think, 'oh you really have no clue do you... would you ask a diabetic if they have given up insulin this week?'....but last week it was hard to hear.... And I'm ok with having a bad week too - I think it's part of processing all this 'stuff' and coming out the other side. I read Ecclesiastes 11 v 9 'As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things'. I've had the privilege of talking at various meetings about our journey and the lessons we've learnt and how God has sustained us. Two weeks ago I spoke to the NZ Elim Senior Pastors get-together - it was a huge privilege to be asked. As I finished I flashed up on the screen a photo of one of Sams medical letters... it starts with his name and then has a subtitle PROBLEMS... then it has 1 - 23 listed.... it literally takes up the first full page of his medical notes...all the things wrong with him medically. Then I showed them a photo of Sam just enjoying life. I'm so glad Sam can't read - he isn't aware of the list... he doesn't wake each morning and go, 'bummer I've got gastro intestinal failure and kidney issues and chronic lung disease...and, and, and. Instead he wakes up and shouts, 'Are we going to kindy today?' This morning his opening words literally were, 'Can we limbo today Mum?' - he is not defined by the list as he's not aware of it. Somewhere sadly we learn to read and take notice of the various lists floating around with different peoples perspectives and we let the list define how much we risk and what we do. I know I have a lot to learn from my darling boy that is so full of life and joy. He's not limited by the 'list'. I don't want to be either. This coming weekend I am going down to Invercargill to celebrate with my big Bro a 'special' birthday.... 50's the new 40 right? So Pete's going to be '40' and I am so looking forward to celebrating with him and his family and all my siblings - all 9 of us in one place for the first time in 5 years. My brother is amazing - he too has a medical list floating around that has a few numbers on it, but he is courageous and determined and I am encouraged as I watch and admire him from afar - getting on with each new day, defying his list and making the most of the potential of the day ahead. On Wednesday I am heading into Starship to meet with the surgeon and gastro specialist to talk through timings and details for Sams next operation. I am not looking forward to it, but after last week I am feeling strong again and we can do this. I leave you with a picture of my boy defying his list.... this makes me smile a lot!...and then I need to find the broom handle as I have promised Sam that we will limbo when he gets home from kindy! If you're really lucky I may take a photo for the next blog!

Monday, May 5, 2014

Home again!

This will be a very quick update! The new school term started today, so the girls are happy to be back in routine, even if a bit disappointed that the fun of the last two weeks of holidays is over. Sam got the all clear to stop his IV antibiotics and that we could be discharged! Oh how fab was that.... so after waiting for IV omeprazole to get sourced etc, 5 hours later we were leaving Planet Starship where I hope to quickly adjust to being back home as a family of 5 - it has been nearly 8 weeks, as we were last in the house together on March 10. Sam is actually quite hard work as he is so happy to be in Starship (non stop TV, can be naughty and people laugh with/at him etc..), but coming home to zero tolerance and realising that he is not the centre of the universe and we are a family of five and we won't tolerate you calling people 'stupid' etc.... so parenting is a challenge - more so with a chronically ill child as you are always second guessing if some of the behaviour is linked to pain or anxiety etc. Anyway tomorrow I will head to kindergarten with him and he is very much looking forward to seeing his friends. I escaped to Rotorua for the weekend with the girls and Francis, to be his support crew as he undertook his first every marathon - he did fabulous and it was such a nice getaway. NZ really is beautiful and after 6 weeks in hospital (looking at Auckland CBD and getting cabin fever) the drive was so stunning as the autumn trees with all their hues punctuated the landscape - it was so nice to see farmland and animals and grass and breath fresh air! He is home on total TPN - 7 nights a week. He is not having any nutrition via his GJ, but is continuing to poop liquid nappies through the night. I am giving him daily IV omeprazole, which will hopefully mean that the 'return home then 2 days later vomit blood' sagas will not happen again. We await a call from the hospital once the gastro team have spoken with the surgical team to see what the plan and timings are for Sam. At this stage we are just going to hang at home as long as we can! X Shirl

Friday, April 25, 2014

Disappointment

We had Sam home for a week then he started vomitting blood .... So that saw us rushing back in suddenly for a 5 day stay while they tried to figure out why. Once in hosp it stopped .. Hmmm. Home for 2 days and then blood vomits start again so we have been back in for last 5 days. He has had a full contrast study (down his GJ), an abdomen ultrasound and a scope and biopsy down his oesophagus. Yesterday Francis and I met with the gastro team to discuss the findings and to make a plan.

With my non medical brain I will try to make sense for you what was said. When the small and large bowel were connected, there was a big difference in their size. The small bowel was much wider then the large bowel. Having different circumferences was tricky surgically but not impossible. It was hoped the large bowel would stretch and adapt once it had milk and gastric juices flowing through it. Sadly, probably due to Sams underlying condition of undeveloed colon/weak muscles, the pressure of the bottleneck caused the widest bit to stretch significantly wider and cause him discomfort and huge bloated stomach. Sam is now not tolerating any GJ feeds and is on 100% TPN 7 nights a week. This is a huge step backwards for him. There are a few potential plans, all with pros and cons. The plans all involve further surgery as it is a mechanical issue that cant be helped with medicine. Option 1 is to reverse the surgery and reduce the pressure by giving him back his ileostomy (poo bag). They hope the release of pressure will help the now overstretched bit of bowel to re size - but no guarantees. Option 2 is to surgically alter the wide bit of bowel and hope having it the same gauge as the large bowel it may work. Option 3 is to just go home on total TPN and see how we go.

Currently we are still in as he is losing a lot of fluid either by vomiting or when his G tube is on free drainage. These losses need to be replaced which requires him to be hooked up to a pump for much longer. Due to his delicate fluid balance etc, they want Sam to have had atleast 3 consecutive days of less than 300 mls so they can add this fluid into his TPN. Unfortunately his losses are fluctuating between 400 and 600 mls. However if this continues they are happy to teach me fluid replacements (plus adding potassium to the bag) if Sam continues to need fuctuating replacements, just so we can be home as a family. Initially I was anti this idea as I want our home to be home and for the girls to have a non-clinical house.... But if it means we can be a family we will entertain this idea if our stay continues indefinitely.

The blood vomits has been caused by his gut not absorbing oral omeprazole (reverts to IV in hosp), so I am learning making up and administering daily IV meds so we can manage this at home. We are disappointed, as both the small and large bowel were individualy working very well. Sadly once put together their collective weaknesses have put more strain on bis system that it can cope with currently. The bowel is very complex so all teams are still hoping if we wait a little longer improvements may happen. They arent rushing in to further surgeries as the risks are high and we need to be sure of where we go from here. Bottom line is always quality of life for our little man. He continues to be the happiest funniest little diamond you ever did meet. We are so proud of the girls coping with tag parenting for the best part of 8 weeks now. As always, friends and family loving and supporting the girls which is a tangible support for us. We are disappointed and sad for Sam. But we are peaceful and hopeful and not despondent... We continue to draw strength that God can do immeasurably more than we could ever ask or hope for. X

Tuesday, April 15, 2014

Ohhh Poo!

I arrived home two weeks ago to our kitchen table laden with all things poo - a poo cake, chocolate covered licorice droppings, chocolate biscuits, choc sauce, chocolate cup cakes with flies on etc et al... in celebration of Sams new pooping status.  Created by a caring, fun and lovely bunch of friends that have supported and prayed for Sam and us through the years.

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The week at home was a challenge as Sam would not/could not pass any wind or poop when he was awake.  He would go to kindergarten and charge around at home with the girls like usual, but with a big barrel tum.  When he was relaxed during sleep was the only time he would poop.  He would wake distressed as it would have filled his nappy, shot up his back and he would be lying wet and dirty.  Due to having a CVL line and 2 renal drains, having liquid poop on him was not ideal.  So there were plenty of 2 am bed and boy change after a quick bed bath... all this being done with a half sleepy boy that just wanted to be dry and the light off now!  This would happen once or twice a night... that is until 2 night ago when he woke having not pooped at all.  We had a clinic appointment at Starship anyway, so we headed in.  As I pulled in to the car park Sam vomited blood!  It was dark brown old blood - not fresh red, but still it was alarming.  At this point I figured that our 30 min appointment would turn into a full blown admission.  As we waited for our clinic he continued vomiting blood.

So the consultant agreed that something was amiss for things to be coming up north rather than heading south, so we were sent to the Childrens Emergency Department to be admitted.  At this point I found myself overwhelmed.  I think it was the combination of the possibility that Sams bowel is not functioning well, tiredness and the frustration of having to be sent back to step one for an admission. As the nurse asked me in triage for Sams medical history and why we had come in today I stared at her and said, 'My son has gastrointestinal failure, damaged kidneys and 17 other things wrong with him'.  I explained to her that it is insane and heartless to have to make parents state the awful condition their child has, again and again and again..... she explained that the information is in the system but it's only accessible after the patient has been booked in.  Being a systems organised kind of person (my house doesn't count!) it doesn't make sense on any level to me that medical personnel recreate the wheel when a simple IT solution may be all that is needed.  There is something intensely upsetting having to think through, formulate, then hear yourself explain your sons awful medical condition.  I do think the system could be improved, but as I write this, maybe I'm just trying to pin my living grief on something, when the reality is that no matter the system the underlying sadness is always there ready to rare its head when a set back sets in.

Anyway, after the tears and setting us in to our room in CED we went for two lots of xrays, blood tests and urine samples set off.  We got up to the ward and after surgical and gastro pokes and prods Sam had his G tube put on free drainage.  The outputs had turned now to lime green (bile).  Before we went home after Sams surgery he was losing 120 mls in 24 hours - Sam lost over 600 in 12 hour period overnight.  The good news is that Sam pooped over night again (300 ml) and he has also done a wee poop again tonight - so things are still going through, but not fast enough and something is up. The plan is that maybe tomorrow we might start him on 5ml milk/hr to see what happens.  Hopefully tomorrow or Friday he will head back to radiology for a contrast study, this time with the contrast going in his stomach and watching it go down so the teams can really see what is happening.

I leave you with 2 humorous tales - for it is not just Sam that requires medicine and we all know that laughter is a good dose.

Laugh 1: Yesterday as we waited to be checked out the 'tea lady' asked me for my drink order.  I asked for a strong coffee with milk.  I watched her make it and was surprised as I saw her putting heaps of milk in it.  She stirred it and passed it to me and said, 'now, would you like a drink too?'  There was only Sam and I in the room.  Out of habit I said, 'Oh, Sam doesn't eat or drink food'', then I thought, 'wait a minute - he's 4..... what 4 year old drinks coffee?'.... at that point I got the giggles and said I would be fine drinking my sons milky coffee.

Laugh 2:  Sams surgical wound looked a bit red and angry last week.  I had a scheduled home care nurse visit who was also concerned and suggested it needing looked at.  I let my fingers do the walking and took a photo on my iphone and emailed it through to Starship.  This is a practice I have been using to save unnecessary trips or I can get a solution to a quick and easy problem with the team 'seeing' Sam without seeing him in person.  I have sent through all sorts of photos recently - pooey nappies, urine specimens, vomit photos etc.   Now, our girls use iPads at school and we have linked their accounts to our email account (which shows on my phone), so we can guide and help them in the dangerous land of internet.  In my total ignorance of technology, yet facade of responsible parenting, imagine my surprise when Candace storms in the door recently after school, mortified that photos of Sams nappies, bile bags, poop and wounds are juxtaposed with her happy school camp shots for all her friends to see!  I thought that was pretty funny - I don't think Candace shared the humour and just rolled her eyes and shook her head in disgust at my computer illiteracy.

Tonight Sam is sleeping well beside me.  We are still hoping and praying that his bowel will wake up, that any adhesions will melt away, that the muscles in his gut will get stronger and push the wind and nutrients through his little body.

As ever we are so grateful for the support and care - Aunty S and Uncle G have had the girls this week unexpectedly, my kitchen was cleaned and tidied beyond recognition whilst in hospital yesterday and we look forward to Francis returning from the UK on Thursday...... It is looking like we could be in over Easter. In the words of our daughter Jasmine when aged 5....'I don't get why a rabbit is carrying a basket of eggs - they're mammals so they don't lay eggs. I reckon someone made it up just to sell chocolate'.  May we see past the celebration of chocolate and Easter egg hunts and revel  in the deep reality of a God that is looking for us....not because He doesn't know where we are, but because He knows where we are.  And He promises to pick us up and hold on to us when we allow......

Happy Easter
X Shirl

Tuesday, April 1, 2014

Home!

Just a quick note to say we got home .... 3 weeks after we went in. Sam still has a long way to go, but general consensus is that it's going to be a really slow process of increasing his feeds.... He is clinically well so we have escaped home for a couple of weeks of normal life before heading back in to try and increase his feeds again.  So he is now only on 5ml/hr x 20 hrs and back to 7 days full TPN. Part of his bowel is very narrow, but the teams are hopeful that with time, a little milk and gastric juices flowing through it could stretch and develop.

So we are adjusting back to life at home and he is very excited about going to kindergarten tomorrow!

X Shirl

Thursday, March 27, 2014

A complex little man!

Well, what a week it has been! Sorry for the silence but the time has been full and the plans have changed so many times I wanted to wait until I had something concrete to write.

So Saturday night was awful after a painful day and there was talk of emergency surgery at mdnight. Following tests/xrays on Sunday, they stopped all feeds into his gut and put his J and G tube on drainage (nothing going in + everthing draining out = less pressure on his tum). This meant that Sam was much happier and clinically well so a rush surgery wasnt needed. He had 4 different bags of fluid going into him to cover his nutrition and fluid needs.
Monday we went to radiology for rectal barium studies - generally unpleasant as the name suggests.
Tuesday and Wed are a bit of a blur of nothingness, waiting for feedback from the dye study and just  hanging with Sam. Wed i did escape and see the girls after school and have dinner at home with Francis and the girls, before heading back in for the night.
Thursday - today. Surgical popped in, then gastro came in. Both have similar ideas of where we are heading but different routes to get there. Basically everyone is happy that the surgery has gone well - it has healed well and there doesnt seem to be any leakage into his torso cavity. They are also happy that the colon is working, albeit sluggishly - sam is soiling between 2 and 4 nappies a day, so this shows that stuff is going through.  They think that a part of the bowel is very narrow which is causing a bottleneck, which he why he blew up and was vomitting after 2 days of being fed milk into his gut. They are hopeful that with time and use, this piece of bowel could stretch and function much better. Tentatively the plan is to give Sam an easy few days over the weekend where nothing is changed. He will have 4 hrs off pumps in the middle of the day when he can run around etc - this too is important for gut motility.

On Monday the next bit of the plan will be revealed, but if Sam remains stable over the weekend we may transfer up two floors to 26b and be under gastro. Gastro would like us to stay in until we have a little milk going in to him. This will be a slow process but a vital one, as TPN is hard on the liver. The other option is that I could take him home for a couple of weeks on total TPN doing gastro aspirites and maintaining fluid replacements, which they are happy to train me in. In one respect it would be great to just get home, but I am conscious that our home not become a hospital and be a haven for the girls.  I guess I am mentally tired after 2.5 weeks of holding my son down for procedures and daily finger pricks, that I just want to be his Mum at home. I know I could learn fluid replacements etc and that there are community nurses that can visit daily, but for today it all seems too much for me to cope with and I want my home to stay our home... I also want Sam to love being at home.
So it could be a long stay ahead, but that's okay. We are very much a strong team - I am so glad that Francis will be here in the weekend and continues to give me a break when he can. We are tag parenting with a very generous showering of practical love from many friends - dinner dropped in last night (homemade butter chicken and banana pizza - amazing!), surrogate netball mum (KC), beds and school lunches for our girls (team Cairns - thanks Em and Isaac for sharing your parents for a bit and to the fun crazy Brits who Jas is mesmerised by your wharf jumping exploits - THANKS). Plus prayers and cares of many......

Slow and steady.....patiently waiting and trusting and hoping for great things.

You can tell we have been in here too long when Sam is singing all the theme tunes of anything ever made by Disney. He also watches tv and then announces that he wants to do whatever it is he has seen, eg , 'I want to go for a ride on a train tomorrow', or 'when I get home i will play hide'n'seek'. Tonight he announed ,'I'm going to be a princess one day', a glance st the tv sees Thomas the tank engine has changed to Sophie the princess!

From me and Sam the sleeping princess, goodnight! X