Thursday, August 6, 2015

End of HPN Awareness Week

Hi everyone

Today an article was in the local paper about our special Sam.  It has been HPN Awareness week and the PNDU has worked hard to try to educate and inform people.  As medicine advances and as time goes on, the HPN community is growing - more people are able to live a relatively normal life being supported by nutrition that goes straight into their veins. This is for a variety of reasons - a bout of illness has damaged the gut, Chrohns Disease, genetic issues (as in Sams case)etc..... but our community is still really small compared to the other awful big diseases out there.  This has its own challenges within the medical community, resources available, supportive community help aswell as living and working whilst not being able to eat.... 

I leave you with the article that came out today in our local paper, but I want to acknowledge and honour the many people that live graciously on HPN.  Many I am in email contact and unlike Sam, they hook themselves up.  This small army of individuals inspire me as a carer of a child on HPN.  I see their adult lives and the hope and joy they have in spite of their challenges and it fills me with hope for Sam and his quality of life.  We are very grateful for HPN, for without it we wouldn't have Sam.  

Enjoy the read..... but if you've been following the blog there isn't anything that you probably don't know anyway!

Botany and Ormiston Times : Botany and Ormiston Times Thursday August 6 2015, Page 0

Tuesday, August 4, 2015

Crazy busy.....

So I feel like I haven't stopped running since we got home last week..... sorting drugs/ his prescriptions of liquid feeds, IVN deliveries, sorting out stoma bag orders and remembering to fit in a morning and evening nebuliser....

Jasmine is also really sick with a suspected Strep throat, so she has been throwing high 39 + temps since Saturday and needing some TLC and is very miserable......... so that is a concern......

It is 11:30pm and I feel like a scene out of a 'Middle' episode - I am on the couch in the dark, with piles of washing on either side, 2 doors leaning against the couch and a toilet and shower door also for decoration!  If police walked in they may think we have been ransacked and the burglars have left a mess on their way out.... but it's just us living!

So, I could tidy the mess, or I could update the blog.... which this week I actually feel like I really really want to as it is HPN Awareness Week.

Check out this link below - very short, cute and delightful.

https://www.youtube.com/watch?v=HGHWRj5RwlA

Sam is doing great with being a 'fire breathing dragon'.  He used to roar as the smoke comes out around the nebuliser mask and we would all scream and run and pretend to hide and he'd laugh and repeat..... now he roars as the smoke comes out and we all look blankly at him and carry on with our day.... and he just keeps roaring in the hope we will react. 1 week in and we can't be bothered, but I figure with the roaring and the big deep breaths sucking in getting ready to roar, that the stuff has no choice but to get down deep into the lungs to help heal them.

He has not had a great week at school - a number of Time Outs and stubborn moments - always takes him a bit to get back into routine, especially after 6 weeks out.... so he has been a little sad and frustrated with life.  This afternoon he announced he was angry and he was 'gonna bust stuff by throwing my cars' - he is so cute even when a monster.  He didn't bust anything cos all I have to say is that 'we will be really disappointed if you do that' and he is sobbing in tears begging forgiveness, so he is fragile as he settles back into family life and school routine.

Tomorrow we have to do an overnight room air only oxygen reading test, Thursday our home care nurse is popping in with supplies and to check up on us.  Friday Sam has cross country at school and he is determined that we all be there to watch him 'playing cross country'.....  Friday for me I simply hope that the toilet is in the bathroom and not my lounge and we get to relax in a tidy ordered home and that our renovation doesn't drag into another week!!!  Please no.....

I hope your week is going well. 
X Shirl