Wednesday, 18 November 2015

Jules has gone purple!

Why?  Because it's Pulmonary Hypertension Awareness Month!

11.5 years ago, my husband and I were told this strapping young man (who is turning 15 next week) only had between 2 - 5 years to live when he was diagnosed with IPAH at just 3.5 years old.  He continues to fight with everything he has, so what else can we do as his parents but fight with and for him too?  Julian is an awesome - although somewhat irritating at times - big brother to his 2 little brothers and his little sister. 

He is a ratbag, he is hilarious, and he - like every other teenager his age - is trying to figure out where he stands in this world. 

He is my hero.

Next Thursday, on the 26th November, he will be going in to the Lady Cilento Children's Hospital to have a PICC (Peripherally Inserted Central Catheter) line put in.  He'll be coming home that day so he can spend his birthday - 27th of November - at home.  On the 30th November, he will be admitted to the LCCH for 2 - 2.5 weeks to go on a medication called 'Veletri', which is administered through the PICC line via a 24hour pump.  My husband and I have to learn how to mix his medication, change the medication cassettes, change lines, change dressings, not to mention learn and understand all about this new medication.  Can you believe we have to buy a cupboard to put all his medication, lines, dressings, etc in????  We will be away from our other 3 children for this time, and my MIL will be staying with them so they can finish off their school year without too much disruption.  Thankfully, they go to an awesome primary school with awesome staff and teachers!

So, can I ask you all to 'Like' & 'Share' my Facebook page - Saving Jules​ - to help us to raise awareness of this terrible condition.  Follow Julian's journey with IPAH and have a bit of a laugh at his antics.  You'll be amazed at how he faces each day.

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