Thursday, October 29, 2015

3 more sleeps....

.... before we get up at 4am to get across to Devonport, north Auckland so we can watch the world cup final on the big screens at the starting line of the Half Marathon!  I am hoping the euphoria of an AB win will help my legs run faster!  If we lose, well I will use that sadness as an excuse for a slow time (not the lack of training!).

We had a big day in hospital today.  We started with a urology review.  Sadly Sam has another UTI, after coming home in pain grabbing his crotch  yesterday.  So we had plenty to discuss with the surgeon as we discussed his 21 uti's this year, the source/type of bacteria, the effects on Sam and a plan to help his drainage to minimalise them.  The outcome is that next month Sam will be booked in for a full urological review.  This requires a GA and the surgical team will do exploratory scopes of his ureter, mitrofonof, and bladder.  From this info they will make a plan with what they think could be the best way forward for him.  We are hoping this will be a day procedure and then the team will review/think/plan and then sometime in the new year put in to place their plan, which will probably be some kind of surgery.

Urological clinic was held with the gastro team in situ and it was great to have the teams in the same room.  We talked through gut flora and it was agreed we need to hit Sam consistently with concentrated cranberry (he would need 1.5 litres of cranberry juice to impact him and that isnt possible to give to him with his current liquid needs), probiotics and a prophylactic abx..... so lots to manage and lots to pay for (not funded) and lots to organise, but hopefully it will be worth it for Sam.

At that point the Respiratory Dr came in to give me feedback from Sams review 2 weeks ago.  Lungs generally are ok, look overall better than 4 years ago, but do have a few patches of disease.  They also discovered an area of fluid between lung and cavity wall that shouldn't be there.  So we then headed down for another chest xray.  When Sam has his urology GA/review the respiratory team will also sneak in and take some fluid out of that pocket to try and see what it is.

Then we headed down to Daystay for Sam to have his first uti antibiotic infusion. At this point I took scripts over to the hospital pharmacy and left Sam to get hooked up and have his infusion to speed up the infusion as I needed to get Sam back to school by 2:15 for school assembly where he was getting a class prize.  I got back from the pharmacy about 40 mins later to find his infusion hadn't even been started!  I asked why not and was told that Sam told them he didn't want it..... UMMM SERIOUSLY?!  At that point I was least pleased as I explained to the nurses that Sam was in fact 6 years old and didn't get to call the shots!  It was so frustrating as it meant that we missed assembly, I had to make alternative arrangements for the girls after school, I had to pay extra for the crazy priced car parking, had to phone Nana to say don't bother going to assembly, had to call his Teacher Aide/School to say he wouldn't be back, missed my afternoon appointment for my Ministry of Health funding review and had to reschedule for tomorrow which means I have to change my work hours (I work on a Friday which is why I planned everything for Thursday), which means Francis has to leave for work super early to drop Sam at school... etc. I get so frustrated that if I am not constantly with Sam inevitably something happens ... or doesn't happen.... the snowball affect on the family can be huge.  I just won't leave him in future - every time I try it's just not worth the fall out and angst on the girls who are left stranded...

Speaking of Siblings, the girls are both doing a 'Sibling Day' next Saturday.  No sick kids allowed - only healthy siblings and they will be with other siblings in their age groups doing a day of fun activities/food/fun which we are hoping can be a positive thing for them as they hang out with other kids that will understand their world.  They are amazing young ladies but they do naturally get very fed up with the last minute changes and how much attention goes to their brother when needs warrant.

So we have 9 days ahead of a nurse popping in for an hour every day to do IV antibiotics.  We talked through today the scenario of us being on holiday and the need for me to be able to take meds/pumps etc with me and do it myself.... so I am going to have training when Sam is in having his scopes.... and then I'm hoping that with that signed off, we won't have to have our house visited every day by a nurse and I can just do it..... but that's a little way off...



This morning I had breakfast with some of the Team Sam running team - Sarah (my sister n law) and Mel - the owner/trainer at Peak for Life.  It has been a great month working with Peak and meeting the ladies there and raising funds for Starship.  We had a full page front spread in the local press and it was very cool that that inspired some to give.  We have nearly hit our target of $10 k for Starship..... with 3 days to go I think we could get there. I still have stuff to list on Trade Me to sell, so we could get there.  We are so very grateful for all the support, moral and financial.  I am not naturally a runner (state the obvious!), but it's always a good discipline for me to do and I am always more motivated when running for a cause. THANK YOU everyone.

Right off to sleep - apparently good sleep is important for running....... maybe if I stay up late I can also use that as an excuse for a bad time.?

One final note... go the ABs and in this context that could be antibiotics or the All Blacks - I'm going for both!

Monday, October 19, 2015

A weekend to remember!

So much happened this past week:

1.  Sam gained a brother and named him Sammy James Junior (more on that below)
2.  We ran a stall at the Otara Markets and made $661.60 for Starship (Woohoo!)
3.  We exercised like never before at PEAK FOR LIFE and raised $560 yesterday (Double woohoo!).

Firstly meet Sammy James Junior.  He landed from the UK on Saturday at 3:58 pm, weighing in at about 1 kg.  He has thick dark hair, olive skin and stomas just like Sam. His accent varies according to whose hand is up his jumper, but it's been amazing to see Sam come to life and communicate with this little guy with the same tubes as he has.  We are so grateful to the volunteers at PNDU in Australia who made this happen for the under 10 year old kids on TPN in Austr/NZ.  Truly Sammy Jnr is going to be a fabulous tool to work with Sam. Just tonight Candace was working Sammy Jnr and asked Sam if he had eaten food today.  Sam said no, then Sammy Jnr said, 'I think I might try and lick some food tomorrow, would you like to try with me?.  Sam is open to anything when his 'brother' suggests it - and yes this power has already been abused by his siblings who were quick to figure out how to make it work for them!





2.  If people watching is your thing, then the Otara Markets is a weekly event that is such a fun vibrant place to hang out and a must for you!  If the sun was shining, you could have been mistaken for thinking you were in the islands somewhere with the sounds, smells and sights.... but we were there selling clothes that had kindly been donated to us from a merchandiser.  They were all new garments/samples of clothes and we had a busy stall.  Candace also stood around with a Starship bucket and people were very generous to give (& yes my 12 year old is as tall as me!).


Sunday saw us up shouting and yahooing at our TV set like most of NZ. The All Black win was a good dose of euphoria which would help us with our Peak For Life challenge at Sunday at 11.  About 30 people came - gym members and extras and we had 3 teams with full on boot-camp type challenges.  It was lots of fun, heaps of energy expended and I have to say that my legs are killing me today!  Running just uses the same muscles, but flipping tractor tyres up and down hills, running up hills to hang on a school playground etc uses a whole different set!  It was a great morning and so appreciative of all those that turned up.  Another $560 raised for Starship.

Tomorrow Sam and I head in to Starship for 11am.  He is on the afternoon list for a broncoscopy, which requires a GA.  They plan to biopsy his lungs, take a look and see what state they are in and also do some chest xrays - basically find out what is going on and see if the pseudemonas is clearing.  He still is on twice daily abx nebulisers and seems to be doing well.  Last week his oxygen testing over night showed he had good saturation, so we are hopeful things are looking good. Depending on how he copes with the GA we may get home or may need to stay in.

Thursday night is our movie night and the tickets are selling really well. We still have a few tickets if you want to come, so you can message me or call Peak For Life to book a spot.  

Hoping you all have a good week and I will update you post procedure and post movie night!


Then it will only be 1 week to the actual run! Due to hospital I need to get up early and run 2 hours tomorrow before we go in to keep on schedule.... am hoping for rain/gales or isolated tornado.... but if not, I will just get out there and pound the pavements!

X

Thursday, October 15, 2015

Term 4 and back to school!

Highlights of School holidays.  Camped in our caravan with a bunch of friends (new and old), Day at the Zoo (amazing!!), lots of cousins to play with! Special family meals on both sides of families - food, laughter, catching up and celebrating life.  Bee got a makeover as Sam discovered false eyelashes in the makeup aisle of Kmart... he brought them up to me and said, 'can I buy these for Bee, he doesn't have any'.  I couldn't say no and for $5 that was a very fun piece of entertainment and joy to us all.





Lowlights: 2 days in hospital in week one due to a UTI and also a day in week two.  Sam continues to be on antibiotics having daily visits for IV infusion.  Also being hounded by his sisters and finally giving up - the pigtails tell it all - photo to follow!

Yesterday Sam got a haircut and looks much more handsome - still has curls!

Next Tuesday Sam will be admitted to Starship for a planned procedure under the Respiratory Team. He will have a GA and they will scope and biopsy his lungs.  They need a base line when he is well, to see what is going on in his lungs.  They want to also see if the pseudemonas is clearing from his lungs - we hope it is due to his twice daily gentimycin nebulisers, but next week we will know more. They will also xray his chest.  2 nights ago I ran an overnight oximeter test on him (oxygen/heart monitor) and the results were very positive - with more information they can make better decisions on his care.

In just over 2 weeks time Team Sam will be running the Auckland Half Marathon.  Whilst the rest of the world is glued to the Rugby World Cup, a few thousand of us will be plodding over the course. I've really enjoyed training this year, even though I started training late due to Sams long admission in July.  Each day when I think of 20 other things I'd rather be doing than training, I think of Sam and kids like him who have no choice but to have difficult procedures done to them... and then it doesn't seem that hard afterall and my internal whinging is kicked to touch as I realise how fortunate I am to have good health to be able to run.
Meet Aunty Sarah - The fastest and fittest member of Team Sam

Check us out at:Team Sam.  We are so very grateful for the generous people that have come to events we have run or donated money.  On Saturday we will be at the Otara Markets selling clothes at a stall.

So life is full as we focus the next 2 weeks on fundraising for Starship and running our race well.  We are very grateful for each other and looking forward to the spring/summer ahead... 

Best wishes
S


Tuesday, October 6, 2015

A busy time ahead...


Bradley Cooper is helping raise funds for Starship... he just doesn't know it!

Peak for Life, is a local gym that has got on board with our fundraising goals and are helping promote events through their members. The gym owner, Mel, is all about making the most out of life by being healthy.  Her emphasis is on nutrition and exercise and life balance, so it's a really good fit, as Starship hospital is all about nutrition and making the best quality of  life for the kids of NZ.

Girls Night out!
22nd October 8pm

Held at the Monteray, get your girls together and come along to watch Burnt with a glass of wine.

$25 per person, all money raised goes to Starship

Peak for Life Challenge day
18th October 9am - 11am

Held at the studio for charity, you will be in teams to find clue, tasks, challenges along the way for 2 hours.

$20 per person, all money raised goes to Starship

So life is busy with longer training runs and sorting out things for the above. 

This week has been total fun for Sam with him meeting many of his cousins for the first time. His Gore cousins have been staying, as has my sister from Napier and her crowd. Tomorrow my Aussie Brother and family arrive, so we are all excited about that as no one has met Levi, the youngest member of my extended family.  So a day at the zoo was a big outing for Sam today, but he mostly coped ok with it.  Lots of play and trampoline wrestling and delightful antics with his cousins has been fabulous.  Tonight there was the usual 'concert' put on by the nieces and nephews (I remember subjecting my parents/family to them), and it was hilarious and lots of special memory moments.

Sam had daily nurse visits until yesterday for antibiotic infusions,so just a normal week for him.  It is hard fitting in all his fluid hours with him wanting to charge around with cousins that can have a longer bedtime, so that is a bit of a juggle and something that I am always conscious of.  


So all kids are tired for sure, and another fun filled day of activities tomorrow - going to see the play, 'The Velveteen Rabbit', courtesy of Make a Wish Foundation and a picnic at Devonport.

So the holidays have been great for Sam and I don't think he is missing school at all, as too much going on here!

X S