Freya’s Story (9)

Monday 15th June 2015, 08:25am

“I am sorry to say that I woke up feeling a bit hopeless this morning.  I woke at around 5am and decided, foolishly, to dedicate some time to carrying out more research on your condition.  I had been so focussed on the results of the blood tests in relation to the infection itself, that I completely overlooked the complications surrounding your little heart.  You see, whilst the treatment has been fantastic in fighting off the disease, it cannot reverse the damage that has already been done to your heart.

A coronary aneurism is an abnormal dilation of part of the coronary artery.  You are taking regular doses of aspirin to stop your blood from clotting because if it clots…it could cause a heart attack. So you are on the mend, but you are like a ticking time bomb.  There is so much for me to ask the doctors. I need to know if my fears are justified or not, because this morning I was reminded of the feeling that I could lose you.  My heart is already broken; it would not survive if anything happened to you.”  

That morning, the doctors visited on their rounds and left me feeling a little more optimistic.  They were happy with the progress that Freya was making, and being confident that they were no longer dealing with an infection they stopped the meropenem antibiotic.  That was good news, as it meant that the last remaining cannula could be removed, and we were not facing a PICC line insertion as originally feared;

“That means you will now only have…steroids and aspirin , and both of those are oral medicines.  That also means they are medicines we can give you at home!  We may be home soon my darling little girl.”

Freya was to have another echocardiogram later that day.  The consultant said they would have liked her to be seen by a cardiologist but the only cardiac specialist they have there was on holiday that week.  They spoke to a consultant cardiologist in Leeds who didn’t seem “too excited” having seen Freya’s echo results.  It was all looking and sounding positive and I dared to dream we might make it home soon.  My spirits were high.

“You really are stealing the limelight this year lady! I couldn’t celebrate my 40th birthday in style because I was carrying you, and we had to cancel our holiday to the Maldives because you were due when we should have been there.  Today is mine and Daddy’s wedding anniversary – the first one we won’t be spending together…Maybe this is another lesson – live for the moment, be spontaneous, make new plans and new traditions.  After all, we are a new family now and I wouldn’t change that for the world.”

I took Freya down later that day for her echo heart scan, not expecting anything unusual.   Our consultant came to see us a couple of hours later, once the echo report had been seen.  He started talking about the positive signs, but I could tell from his tone and his body language that there was a ‘but’ coming.  And then he told me.  Freya’s coronary arteries had dilated further, the inflammation was still causing changes in her body, and she would need a further dose of immunoglobulin to try and halt it. The next day, Freya would take another trip in an ambulance, only this time for a stay on the Cardiac Ward at a neighbouring city hospital.

So much seemed to happen in those first 2 weeks that it seems hard to believe reading back over my journal that it really was only 16 days into this journey.  And my, what a rollercoaster it had been.  The 15th June was my 13th Wedding Anniversary; unlucky for some, eh?!  And that day marked a change in my attitude towards Freya’s illness.  Up to that point I had moments where I feared the worst, followed by hope that Freya would get better.  Whenever I voiced my concerns, I was told I had to be positive.  Whenever I tried to be positive, Freya’s health would take a backward step.   It was then that I started to become consumed with fear that I might lose my daughter to this illness.  I still can’t find the words to explain to you how that felt, how it still feels.

“…The problem is sweetheart, you are so young and so tiny.  I don’t know how strong you are, or how much they can do.  You have so much developing to do, and I don’t know how any of this will affect you long term.

I have to keep pushing back the thoughts that I could lose you.  Tears prick my eyes even at the thought that it could be a possibility.  I love you more than words could ever describe.  This is so unfair.  I want to scream, shout, hit out at all the people that have given you care over the past few weeks without noticing the signs…Why did no-one diagnose this earlier? Before it broke your tiny heart?”

The next morning, following the (delayed) second dose of IVIG we would be transferred to Leeds General Infirmary for the 3rd stage in Freya’s journey, and I would endure some of the worst days of my life.

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