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!

Check out .... 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.

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.

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.