Just Breathe

I'm not sure what words will describe how I'm feeling right now, but I did feel the need to get all this out, even if it is extremely personal.  Actually, I do know what words will work.  I just can't repeat them in polite company.

I have found it harder and harder to hold on to my emotions these past few weeks.  I'm sure Jules can see the worry in my eyes whenever he gets out of breath, despite my best intentions to hide it from him.  I'm trying desperately to stay calm when he collapses to the floor, resorting to pathetic jokes about how out of shape I am while I put my arms around him from behind and help him to stand up.

When I think about what's coming up, my heart races.  I feel sick.  My hands tremble.  So does my chin.  Hell, my whole body does.  My throat gets tight and starts to ache.  But I grit my teeth and swallow it all back down.

Because Will and I only cry when Julian's gone to bed.  He's not supposed to be our rock, and he's not supposed to see our tears.  We can't put that responsibility on him.

Dammit.  It's not fair.

A few months ago, while Julian & Will were in New Zealand - thanks to the generosity of a number of people - we found out that there were a few locals getting quite nasty about us because we had started a GoFundMe page for Julian to travel to New Zealand.  To fulfill his big dream before starting 'Veletri'.  One of the things that was said was that we "always had our hands out, just because we had a 'sick' child".  There's a long story behind that.  I won't bore you with the details though.

If only.  If only he was just 'sick'.  I would do anything for just 'sick', instead of terminal 'terminal' and 'incurable'.

You know, on a day to day basis I can usually ignore the fact that my son is dying, bit by bit.  One heartbeat at a time.  Most days, it's easy.  Julian looks 'fine'.  He's got great colour.  He growing so tall, and his feet are bigger than his Dad's!  He's funny, he's a ratbag, he's so much fun to be around.

And then, out of nowhere, he goes pale.  He struggles to breath.  His heart pounds so hard that it vibrates the sleeve of my own shirt when I put my hand on his chest to check his heart rate.  His heart races so fast I can't keep count of the beats.  He collapses to the floor and can't get up without help.

He wakes up out of breath.

I'm just happy he wakes up.

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.

A Message From Jules

My younger siblings and I

I am feeling shocked. Well, to be honest, I am feeling like any teenager right now, with all these emotions raging inside me. But most of all I was feeling shocked. Here, let me tell you why.

Last Thursday (25^th June) I was at my eight-weekly clinic appointment (or check-up, whatever you want to call it) and I was bored out of my mind. It was literally one of the most boring days of my life. When I was talking to friends, or seeing one of the doctors, that, was different. I had something to do. Even though it is tiring and tedious talking to cardiologists and physios and psychiatrists and cardiac fellows, etc. It gives me something to do. But, when we’re just sitting there, doing nothing but waiting…. Ugh. Talk about not having anything to do. And then, when I go to make a cup of tea for mum, I get told off, getting told that “us children aren’t allowed in there”. Being one to respect older people (in most cases) I walked out and left it alone. That didn’t mean I wasn’t just a little ticked off though. 

Anyway, while I was waiting for my final appointment, I sat in a beanbag (well, more like lay in my beanbag) wondering about what I was going to do when I got home, when I fell asleep for about two hours. Although we thought that my final appointment – the one with all my doctors – would be at either 1:00 or 2:00, I ended up waking up at about 4:00 for the appointment. Go figure.

I walked into the consultation room, still dozy and groggy from sleep, expecting the normal brief about how my INR has been going, keep doing my regular exercise, blah blah blah. What I did most definitely not expect was for my cardiologist – Dr. W – to tell Mum and I that I was going to have to be put on a new medication called Prostacyclin (Veletri). If you aren’t familiar with this medication, let me tell you about it. Basically, this medication will hopefully make me the healthiest I have ever been, along with the added bonus of making me feel a whole lot better. But, like any good thing, it comes with a price. Basically, this medication being given to me is

“Like a doctor telling a paraplegic that his legs are cured but he still can’t walk for the rest of his life” – Will (Dad) Forester, a couple of days ago.

So, basically, I won’t be able to do most of the stuff I can do right now. Things such as:

Rollercoasters

Water Slides

Swimming

Kicking a soccer ball around

And more.

Which is honestly going to drive me absolutely crazy over the next couple of years, or until the oral medication comes out. But that’s OK! This will give me way more time to practice my hobby. Shhhh, my hobby is a secret. No-one shall know.

The way I felt when I was told that I’d have to start Prostacyclin was a very strange feeling. Because I had been told in the past that it was only a medication to be used as a last resort, I was furious. So very, very angry. But, then, there was the feeling of excitement. The feeling that said to me that maybe – just maybe – things would go upwards for a change.

Right now, at this moment, I still feel the same way, sort of. I still feel angry that I have to go on a “last resort” medication, but it’s more suppressed. Also it’s suppressed because Mum told me that Dr. W has never led us astray before. But things are definitely going to get better, based on past results. So I will be looking forward to that.

That’s all from me this time. I’m not sure if I’ll be writing more blogs for Saving Jules, but if I’m asked to I will definitely do it. It was a pleasure writing down my feelings and getting them off my chest.

Until next time, have a good night and good day.

     – Jules

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.