Freya’s Story (26)

Today mummy had a meltdown that she didn’t see coming sweetheart.  It happened in the place where it all began; the place where you were born, and the place where you were nearly taken away.  I hadn’t expected how a visit to our local hospital would make me feel.

You see we’ve been having a few challenges  getting you the medication that you need.  You now only take 2 medicines; aspirin to thin your blood, and lansoprasole to protect you tummy from the aspirin.  The lansoprasole has a strong relationship with the aspirin dose, so if the aspirin goes up, so the lansoprasole is increased to make sure your tummy receives enough protection.  Sounds simple doesn’t it.  Well, it would be if it weren’t for a number of reasons.  Firstly, the aspirin dose (which is currently 5mg per kilo) is prescribed dependant on your weight.  At the last weigh in you were just coming up to 6kg (5.62kg to be precise), so the consultant increased your aspirin dose to 30mg.  Simple.  Ha! Except that aspirin (well, the cheap aspirin that the NHS supplies) comes in 75mg tablets.  Hmm, tricky. So we have to dissolve a 75mg tablet in 5mls of water and then give you 2mls of the solution.  The lansoprasole comes in a 15mg tablet which we have to dissolve in 5mls of water and then give you 1.3mls (precisely!)  Lansoprasole is intended to be placed on the tongue to dissolve, but clearly at your age you’re going to find that a bit tricky, so I have to dissolve it.  And it doesn’t dissolve very well.  Not at all.  So who knows if the right amount is dispersed in the water or whether you are actually getting 1.3mls of the medicine?!  To be honest I am more concerned about the aspirin, and being a dispersible tablet that one usually works pretty well.  Once I’d worked out how to get the air bubbles out of the tubes (syringes doesn’t seem like the right word – no needle?) I felt pretty confident that you were getting what you needed.

We are given a 28-day supply of your medication, which in usual circumstances would be prescribed by your GP.  Except our GP is refusing to prescribe aspirin because you are so young, despite it being vital and authorised by a cardiology consultant.  The problem we have is that aspirin isn’t licensed for use in children, so medical professionals (that aren’t used to cardiac issues requiring this treatment) get a little edgy about prescribing it.  And our doctors surgery had an incident where a baby was  given the wrong dose of aspirin for a cardiac issue as a result of poor communication between the hospital specialists and the GP, so they’ve made a decision that they will not prescribe without crystal clear guidelines from Leeds.  Add into the mix a baby who gains weight exponentially, and slack administration in Leeds, and you’ve got a recipe for disaster where no-one can keep up with the right dose, and our GP has closed that door for now.

This becomes frustrating when we run out before your next cardiology appointment is due, and there is always a window of about a week where I spend hours on the phone back and forth to your GP and the Cardiac Nurses trying to work out how I get you the medication you need it before it runs out.  At the moment you are being seen in Leeds once a month, which is good but even then there is usually more than a 28-day gap between appointments so we’ve found ourselves back in a situation where your medication has run out, but you are not back in Leeds until the 7th September.  A few phone calls though, and one of the Cardiac Nurses managed to organise for the paediatrician you were originally under in Doncaster to prescribe the medication (yay!) so today we had only to take a trip into town, rather than a 40 minute drive to Leeds.

When I set off with you and Fin in the car I had no idea that this trip would end as it did.  I was completely calm, matter of fact, a mum in a car on her way to pick up a prescription.  I had to go to the Children’s Observation Unit in the Women & Children’s Hospital to collect the script and then take it to the hospital pharmacy to collect the medication.  As I pulled up to the car park I did get a sense that this is where it all began, and I looked up to the top floor of the hospital and recollected those wonderful moments when I gave birth to you, my beautiful baby girl, and set free all the fears I had during the pregnancy that something bad was going to happen to you.  I took a deep breath and made my way into the hospital, called the lift and made my way with you and Fin up to the 4th floor.  The Children’s Ward, where you spent the first 8 days of your illness, was to our left.  There was a sign on the door saying it was closed.  Not permanently I guessed; sometimes when the wards were short-staffed they pooled the resources into one ward rather than keeping both open.  We turned right and approached the door to the Observation Unit, the unit where we took you after we had been seen in A&E.  I had taken just a few steps before a feeling of panic overcame me, and began to cry unexpectedly.  But I had Fin with me so I needed to be strong and brave and not let him, or you, see me sad.  So I shook it off and pressed the buzzer, but I couldn’t hold it back and walked into the Unit with tears streaming down my cheeks.  A nurse approached, she looked concerned, but I tried to collect myself and told her that I was there to pick up a prescription for you.  She asked me what the prescription was for, and for the first time since this whole ordeal began I could not for the life of me remember the name of your medication!  I remembered the aspirin, but no matter how hard I tried to summon up lansoprasole in my mind, it would not come.  I felt under pressure from the nurses watching the crazy woman (me) in the reception area, crying and looking like she was going out of her mind.  They said it didn’t matter and found the prescription for me.  I left the ward, and once out on the landing area I fell apart in heavy sobs.

I don’t think I’ve experienced a panic attack before, but I would say that was what I had right there on that landing.  I was gasping for air in between the sobs and I felt like it was never going to end.  Finlay looked up and said “why are you upset mummy?”, which pulled me from whatever it was that I was in and I took a few deep breaths before shaking myself off and heading towards the lift.  Although I was able to hold myself together better, I couldn’t stop the tears from flowing.  Seems to be the case these days – I can go days without shedding a tear, but when I do allow them to fall there’s no stopping them.  It’s worse when I am on my own and I am left with my thoughts trying to process the hell that we have been through together.  I must have looked a mess by the time we got to the pharmacy, and I really could have done without the rigmarole that followed as the pharmacist questioned your medication, the dose, the way in which it is administered.  We definitely need to get a more robust plan in place for your medication, especially when the cardiology appointments start to become wider apart.

Your Annie Nic says that I should go and see my doctor; that it isn’t right that I should have such bad days or that I find it hard to be alone and I might need some help to come to terms with it all.  But I think I am doing ok.  As well as can be expected anyway.  It’s kind of like post-traumatic stress isn’t it?  And it’s bound to come out now that things are settling and there is time for me to think about me.  I don’t know.  Right now I feel so confused about it all.  I feel like I’m doing ok, and then I’m transported back in time to those days where you were not my little Freya, when you looked so lost and confused and I couldn’t make you feel better.  I wonder how long I will be haunted by the memory of those weeks we spent in hospital.  If there will ever be a time when I look at you and realise that I’ve forgotten about anything but how wonderful you are.  I hope so Peanut, I really do,  because I don’t want to waste our time together agonising over what might have been.  The worst did not happen.  You fought back, and your little face shone again, and it continues to shine brighter every single day.  That light is the fuel I need to keep me going.  I’ve said before, this world is a much brighter place because you are in it.  I love you, I always will.

2 thoughts on “Freya’s Story (26)

  1. Oh my poor sweetheart. I think Nic could be right (isn’t she always LOL) post traumatic stress also has a treatment so perhaps you should go and talk to the doctor about it. It’s not a weakness, you have been through hell these past few months. You need to look after yourself too .love you xxx

    Liked by 1 person

  2. I think your mum is right. You have been through so much. Go to seek help. It will help you get through what you’re feeling.
    Thinking of you xxxxxx


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