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