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!

1 comment:

Clare said...

Well the All Blacks have won and as i write I hope you are crossing the line (or near the line) at the end of your super speedy and inspired marathon!
Always good/interesting/inspiring/fuel for prayer/not sure how to describe it ... to ready your blog news. Love to one and all!