Hit by a Bombshell

At Julian's last appointment of the day last at the Pulmonary Hypertension Clinic last week (Thursday 25^th June 2015), we had a bit of a bombshell dropped on us.  It was one of those appointments when I wished Will had been with me, but we have 3 other children in primary school and someone needed to be home for them when they came off the bus.  I’m just thankful my Mum had gone in with us this time to visit my teenage cousin who was in hospital for a ‘tune up’ for Cystic Fibrosis, because I was absolutely shell shocked when we walked out of our final appointment.

Exhausted after a day of testing

Long story short, sometime between September and the end of the year, Julian will be started on a medication called 'Prostacyclin', which 'inhibits platelet activation and is also an effective 'vasodilator'. It will be given through a PICC line or a Hickman line.  As I understand it, this used to be a 'last resort' medication, but Julian’s cardiologist has been in contact with other specialists in the field, and it is now thought it is a far more effective preventative, rather than a last resort, as there is no guarantee how effective it would be when people got that sick that they had no choice but to be put on it.

At first, Julian was on see-saw of emotions, ranging from “At least I will feel better” to “You would all be so much better off without me, look at all the problems I cause."  Now, he seems to be very accepting about it. 

This is going to be such a huge lifestyle change for all of us and there are so many things I want Julian to experience before he has to start on Prostacyclin - which will be very restrictive to what he can and can't do. I want him to go to town on all the things he won't be able to do once he starts. New Zealand. Water parks. New Zealand. Roller coasters. New Zealand. Swim with dolphins. Did I mention New Zealand???   As if Julian doesn't miss out on enough of life, now he will be even more restricted.

This is completely unexpected for us, and not something you can ever plan for. We have done our best to make sure we can do everything together as a family. Some of you may not know, or may not realise that Julian's condition - Idiopathic Pulmonary Arterial Hypertension - is terminal. That means it will kill him. Not might. WILL. It's not a matter of if, but when. This is why we want to get as much done for him as possible.

Our family is so appreciative of all your support.  Julian especially loves the messages of encouragement he receives from you all.  Keep an eye out for a blog post from him, to all of you, letting you know how he felt, how he feels now, what he will miss and what he’s looking forward to.

Recording Life

On the way home from the new Lady Cilento Children's Hospital late Monday afternoon, Julian was being his usual self in the car – and by that, I mean a little bit nutty.

So, I told him he should video himself more often – record his life – and this is what he came up with!

 

A trip to the new hospital!

We were at our neighbours son’s 7^th birthday party last Sunday morning when my 11 year old came up to me and told me “Mum, Julian’s not feeling well.” 

I looked over to the swings – where all good teenagers and pre-teens go to play at a playground! – to see him slumped over one of the swings on his stomach with his forehead resting on the ground.

When I got to him and helped him to stand he said that he was having chest pains, so I walked him over to the picnic tables and helped him to sit down.  He flat out begged me not to call an ambulance – he didn’t want to frighten the little kids at the party – so I kept a close eye on him for a while. 

Thank you Fairy Raine!

He rested for a bit, then we did a slow treasure hunt and he had his face painted by a lovely lady called “Fairy Raine” who went along brilliantly with my dare to have his face painted like a Pirate Princess (we were at a Pirate Party to, after all) – he got $10 out of it too!  By the way, I can’t recommend her enough.  She was absolutely brilliant, related fantastically to all the kids, and my own 4 thought she was fantastic. 

So, long story even longer.  He tried to get comfy on the picnic bench, slipped, bent his finger back and promptly sat on it.  Arrrggghhhh!  It swelled up like a bloody balloon, and we toddled off to the local Ambulance station to see if they thought it was broken or not.  No one was there so Will and I made the decision that I would take him to Robina Hospital ‘just in case’.  He is on Warfarin, so our worry wasn’t just that it was broken, but may be bleeding in the joint.

Waiting for results . . .

When we got to Robina Hospital, they took us straight through once they heard how he had injured his finger.  He was hooked up to an ECG, bloods taken, xrays done and they were in constant contact with the Cardiac Fellow at the Lady Cilento Children’s Hospital.  

 

HUGE tellies in the ED at Lady Cilento

  

A few hours later, he was transferred to the new Lady Cilento Children’s Hospital where he spent the night, and then spent Monday having tests done.  The new hospital is great, I just wish we hadn't had to see it so soon!

 

HUGE rooms too!

Nothing was found, and his results were all almost identical to the results from the Pulmonary Hypertension clinic in November.  The doctors are of the opinion that he just did too much.

So, now to figure out how to keep a teenager quiet for the next few days . . .

A heartbreaking lesson about friendship

Julian learned an unfortunately hard and heartbreaking lesson today about friendship.

Friends don’t always value you as much as you do them.  He has discovered that it is all too easy for some people to dismiss who you are and your long-standing friendship when what you say doesn't suit them.

He discovered that it hurts and it breaks your heart.

I must admit, I am desperately worried about the backlash when he goes back to school in a few weeks.  I just hope this opens up new opportunities for longer, firmer friendships and isn’t alienated by rumours and lies.

I’m looking forward to meeting his new friends and hope that the old ones soon learn what they are missing out on.

Chewing Gum and Duct Tape

I learned something about myself recently.  It wasn’t pointed out to me, just a realisation that came upon me suddenly while I was clicking my way through Pinterest.

I’ve been hiding myself away from the reality of our life with Julian’s condition.

It is why I have stayed away from blogging.  It is why I have stopped any form of research, and it is why I stopped looking forward to getting together with the other families at the Pulmonary Hypertension clinic every 3 months.

I may seem fine on the outside, but if you don’t see me here or on the Saving Jules Facebook page, it may be because the chewing gum and duct tape that are holding me together inside is coming loose.