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....