Only a few people know what Thursday is to me

and fewer still know what it will mean for Ivy.

I haven’t talked alot about the pulmonary hypertension that was detected when Ivy went for her echocardiogram three months ago or the very fast heart rate that brought it to our attention.

I haven’t talked about it very much because I know what it means if it’s still there, when we go for the follow up echo, on Thursday.

I’ve read all about it.

I know all the possibilities


I am scared.

Pulmonary hypertension can be transient, especially when there has been pneumonia.

That’s what I am hoping for.

It’s what the paediatrician is hoping for.

If it’s not, if it is still present on Thursday, then it will mean alot of things.

Things that have kept me up at night.

Pulmonary hypertension is essentially the pressure in the lungs being higher than normal.

It makes the heart work harder than it should.

If it is the hang around kind, it will change Ivy’s life.

It will shorten Ivy’s life

by alot.

It will mean more medication and eventually oxygen.

It will mean that if Ivy gets to child bearing age, she will have to think long and hard about the risks and the strain a pregnancy will have on her body.

Eventually pulmonary hypertension causes right sided heart failure and


I cannot tell you how hard those words are to write, to look at, to take in, to accept.

Every ounce of my body rejects them, wants to vomit them up and flush them away so that they can no longer cause the upset, the turmoil that pounds through my heart and head.

I look at her. I watch her, breathe her in.

She is such a vibrant little spirit.

I know that come Thursday I may have to face my fears.

For the last three months I have been fighting it.

Hoping that the echo will bring good news. I have sized her up, thinking she is wholly better than she was after the first test, thinking it can’t still be there.

The truth is, I don’t know.

Thursday is going to be a very big day because along with the echo and the cardiologist, we will see the respiratory specialist.

We will be a step closer to knowing if she has bronchiectasis.

Bronchiectasis and PH go hand in hand, it seems

and there it is.

Transient hypertension is what I want to hear.

PH secondary to bronchiectasis is not so great but with treatment and physio, the lung disease could be minimalised and so the PH could be slowed

Idiopathic pulmonary hypertension are the words I do not want to be confronted with.

Those three words are the stuff of nightmares.

Why am I writing this now?

I want to have it here. I want it to be here so when I come back to it I can remember how I felt, how it feels.

I need it, so that I can look back on it and laugh when it is a great out come.

I’m putting it here, for my own selfish reasons.

So I can have you all hoping along with me, so if, on Thursday, it is not good news, I can have a place to come to, so she doesn’t see my tears.