Thursday, November 26, 2015

Does Starship have a Tooth Fairy?

Today Sam went to theatre for an elective - 3 different teams were organised to do their bits under the one GA - brilliant co-ordination by Sams fabulous Nurse Specialist as this was no mean feat to sort!

We went down at 1 pm and each team wanted to draw on his body where/what they were doing - Sam wasn't having a bar of it as he has heard me countless times tell off his sisters for drawing on themselves.... so after some convincing he wrote his name on my arm and then the Drs wrote on him (arrows to indicate where!).  The permanent marker should wear off in a few days.... sort of my Starship tattoo!

The urology team had the first slot and they were putting a teeny camera into all things urological - penis, ureter, mitrofanof, bladder and taking a look and a measure to assess how everything was. They will now assess and make a plan for what is the best for Sam and his drainage and probably he will have a surgery booked in shortly for that.... kind of the 'cruel to be kind' approach to parenting, which I wish we didn't have to do!  If a re-jig of his plumbing helped him not to get back to back uti's that would be fabulous, but some short term pain to be had in the process.

Then the radiologist jumped in and took a biopsy of a pocket of unexplained fluid sitting between his lung and chest wall, then the dentist popped in and gave him a total oral overhaul!  His teeth now look white, except the two that are sitting in tub on the table beside me!  He has had two wobbly teeth for a while, but as he doesn't eat they weren't coming out  anytime soon so they decided to take them out.

He looks cute without them, but he is hard to understand, but that could also be due to the slurring post operative!

For the first time ever he woke up not violent!  He was still shouting at me to 'go away, go home, I don't like you Mummy', but he wasn't struggling or throwing things.  The anaethaetists thought long and hard what to do to try and improve things, so whatever they did seemed to work at treat!

He has been sleeping on and off and as nothing invasive or surgical happened, we should get home tomorrow.  He will be sore, as his gums took a hammering and I'm guessing all the other parts that were poked and prodded will be a bit sore, so we are happy to stay in and his pain to be monitored.

So we look forward to hearing the outcome of the procedures with a view to improve his quality of life.

He looks so peaceful, our brave brave little man.

X Shirley

Saturday, November 7, 2015


6 Days ago we were at the pre-race event, collecting our race bibs and getting excited about running for TEAM SAM.

Well we did it!  Thanks to you all for your kindness, generosity, encouragement and support.

Here are some shots to prove we did it!  All up, Team Sam raised around $13,000, with the added addition of Sams cousin Carolyn from Owaka.  Carolyn came on board as a Team Sam member and raised over $500 in 2 weeks! 

The before shot of Me, Elaine (Sister) & Carolyn (niece) was at 4:45 am, about to board the boat to get to the start line and watch the All Blacks in the World Cup Final along with thousands of others on the big screen. It was such a fun atmosphere and a great way to start the run.

This one was as I spotted Francis, Nana, Sam and Jasmine as I came into the final 100 m stretch.

And this is Sam thanking Mel and her team from Peak for Life that helped us raise over $1000 for Starship.

The generosity of so many is very humbling and please know that it will go towards helping kids of NZ get the best treatment they can, to help them live a life of fullness as they live with health issues. Thank you seems easy to type, but know that my heart is so full as I see the impact on lives every time I step into Starship.

Yesterday I stepped into Starship again with some more urine samples from Sam.  His uti is not clearing and today will be day 9 of having a daily visit from a nurse to do his infusion.  It is unclear at this stage if they will continue the drugs he is on for a longer course, or wait and see what 'grows' from these samples and change the antibiotic.  He is in pain and uncomfortable each time I drain him, but otherwise he is happy.  Yesterday at school he bought an ice block, so he could be like one of the other kids... and he licked it about 8 times.... well put his tongue to it.  So he was so proud of himself for doing that. We continue to work with Sam to try and engage him in food play and have a relationship with food that isn't currently there.

For me, I have had an interesting journey this past few weeks.  I have tried to hold down various jobs over the last 3 years, but it has been a hard juggle with tiredness, hospital admissions, having to always be thinking of sorting Sams drugs/appointments/drains/pick ups from pharmacies etc and the stress I put on myself as flexibility of my employer was needed.... at times it seems Sam is a full time job.  It costs a lot to have a 'Sam' - car parking, petrol, prescriptions that aren't covered by Pharmac... but this has only been a part of my motivation for working.  I think work made me feel 'normal' and I could pretend I didn't have a chronic kid that isn't going to get better. When at work I wasn't 'Sams Mum' that was powerless (languishing in hospital with wrong appointment times and at the mercy of each medical team and waiting for lab results etc.).  I was someone that for a moment mattered and felt that I had value, that isn't bestowed on stay-at-home-Mums or Mums of sick kids. At times the rhetoric in the hospital is that you as the parent know your kid the best, yet at other times your opinion and your time counts for zero.  It can be very disheartening.

Well, I'm not meaning to write a sob story.... but rather to say that I have realised I have tried juggling work, family, Sam and at the end of that I am tired and starting to drop the ball with Sam. He is now on different meds that need rotating, which requires me to be aware of what/when and then changing it.  As I get older, I can't bounce back as quickly from being up multiple times in the night from pumps alarming or Sam being sick.  I have realised that I am in a privileged place to be Sams Mum... and Jasmine and Candaces.... and I want to do it well, and I can't do that when I am so tired from working and juggling.  So I have finished paid work and am now a member of a privileged bunch of unpaid workers... job description is very broad and also very weird (my hand bag had urine samples in it yesterday!).  I promise not to revert to wearing big Ts and leggings and will still apply lippy!  I know that God can provide our physical needs.  But I am looking forward to season of calm .... it may not look calm to people watching on, but to have the pressure of work gone, it will be very different.  It means that when I have appointments, clinics and procedures with Sam, I won't have the pressure of making up work hours when I get home that night.... I can get home and just be Mum.  It does how ever mean that I can't roll out my usual excuses for why the laundry is so far behind and why the house is messy... I would gratefully receive any plausible explanations that I can use when the laundry is still backed up now that I am not working!

But I finish on a high note... THANK YOU everyone for your generosity, encouragement and kindness.... it takes a village to raise a child, it seems to take a small city to raise a Sam!