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.


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!


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