Freya’s Story (16)

After the follow-up echo on the previous day the doctors in Sheffield indicated they were pretty happy with Freya’s progress, and it seemed they were ready to let us have some time at home.  That afternoon, waiting for a decision on the day release for the weekend, I reflected on my time with Freya in the hospital.  Whilst the whole situation had been terrifying and devastating, one thing I did get from being in hospital with my daughter was an immeasurable bond and an intense understanding of every move and signal she made.  I became so in tune with her over those weeks from being in such close proximity all the time, that I can say I worked out what she needs from me much more quickly than I ever did with my other children.  Whenever I am away from her I feel there is an empty space somewhere near my heart, like we are inextricably linked through our experience.  I know that sounds daft; we are mother and daughter, of course we are linked.  But this feels different somehow.

Friday 26th June 2015, 16:05pm

“Well it has to be said that every cloud has a silver lining and the upshot of this month in hospital is being able to watch you grow and develop.  I mean really watch you.  Being with you 24/7 means I haven’t missed a single change.  Not only…the physical changes like your hair growing or you putting on weight (today you were 9lb 15oz), or that you’ve grown out of some of your clothes….Whilst you’ve been in here with me you have hit a major development leap, and I’ve noticed you taking much more notice of the world around you in the last couple of weeks.  Such a shame then that the world according to you has been this hospital room.  When we go outside [once Freya’s condition had stabilised they would let me take her out for short walks], your eyes open so wide I think they are going to pop out of your head!  If you could talk you would be saying “Wow!”

You had started to find your hands just before…this adventure and had begun to suck your thumb.  Unfortunately the nurses then stole those fingers away from you by putting a cannula in each hand and bandaging them up.  But now you are free from all the cannulae and just as you should be.  You have more control over you movements and like to grab hold of things like my finger, or even the wires of the medical equipment (you tried to take over an echocardiogram from the sonographer yesterday).  You…like the feel of material…I’ve made a little muslin nest in your cot to make you feel more secure and you like to hold a piece up near your ear.  Earlier you were gripping the label as you fell asleep…  

IMG_5405 IMG_5406

…Other times you hold onto the neck of your top, or mine if we are having a cuddle like we are now.

I’ve noticed that you rub your head when you are tired, and if you are trying to get to sleep but wriggle about a lot you have usually wet your nappy.  You like the idea of a dummy, but…you suck on it so frantically it actually stops you from going to sleep.  You like to be cuddled, but when you get too warm and just want to be put down you moan a lot!

…You are such a smiley, happy girl too (unless you are hungry and then we all know about it, haha!)  You wake up at about 6am and cry a little, but as soon as you see me your smile lights up your face, and warms up my heart.  

You like music…This morning we did a bit of dancing and singing to various tunes on my iPhone.  It would appear that you love Ed Sheeran, don’t mind a bit of Bruno Mars, but are really not keen on One Direction!

[The Rheumatology Consultant] has said that we can go home over the weekend as long as we come back at teatime and stay the night here.  I can’t wait to see you back at home tomorrow, even if it is just for the day.  Your eyes are going to pop out when you see our house properly for the first time, and when you get a look at your beautiful bedroom with the paper butterflies flying up the wall…

…It’s time to get you home sweetheart, we’ve been here long enough.”

That weekend we managed to get Freya home both days.  By the time all the paperwork had been done it was early afternoon before we got home.  But those few hours with her back where she belonged were great.  When Freya was in the hospital, people would keep saying “She’s in the right place”.  If they didn’t know then how much that statement made me want to punch them in the nose they will now!! The hospital was never going to be the right place for her.  Home was where she belonged.

After an uneventful weekend, the doctors decided on Monday 29th June, 30 days since Freya first became ill, that we could take her home.  We would have to return with her twice a week to repeat blood tests and review her progress, but we didn’t care!  That morning I felt like I could tackle anything, and that our journey was finally over.  But as the day went on, hanging around waiting for all the necessaries to take place for our release, the reality of going home begun to sunk in.  As much as we wanted to escape the confines of the hospital, I had underestimated the security I felt within those walls.

Monday 29th June 2015, 16:20pm

We are nearing the end of your in-patient adventure here at Sheffield Children’s Hospital sweetie.  The doctors have all been to see you for a prod and a poke, and all are happy for us to go home.  Your blood results continue to be positive with CRP, ESR and your platelet count all heading in the right direction or in normal range.  We are all packed up and ready to go as soon as they come with your medicines for home.  You are fast asleep in the cot for the last time!

It isn’t the end though sweetpea.  It’s the end of a chapter I guess, but it feels like we are just setting off on a new path.  I wonder how long your life will be plagued by hospital visits and tests, or if we will ever receive the all clear to live a normal life.  But who wants normal, eh?  Normal is boring!  You weren’t destined to be normal, nor should you be.  Here’s to living an atypical kind of life.

I have a feeling we will have many hurdles to leap over in the coming weeks, and your journey is going to be a long one.  We have yet to challenge the treatment for your heart…We’ve received some really valuable information from a KD specialist in Bristol that is going to help us begin that battle this week.  I cannot protect you from the condition you have been left with, but I can fight to ensure you are receiving the right treatment to give you the best possible chance.

I am trying so hard to focus on each day at a time, and I’m doing pretty well mostly.  But lurking in the back of my mind, forcing a tightness in my chest and a fluttering in my stomach, is the thought of losing you.  I’m trying to bury those thoughts way down deep because they threaten to destroy my hope and my faith and me along with them.  Not a minute goes by where a tear does not prick at the corner of my eye, or my stomach doesn’t do a tiny somersault [every time I look at you].  I can only hope that over time those feelings become less and less.

Today we should be celebrating going home.  Usually you leave a hospital fit and well after receiving the appropriate treatment. I feel like a lamb being thrown to the slaughter to a life of joy tarnished by fear.  Every day I will grow to love you more and more, and every day the fear of losing you will grow too.  There is a scream at the back of my throat threatening to come out, and I bite my tongue to stop the tears because I know if I…let them fall they will not stop.

Kawasaki and me are not friends.”

Two things happened that afternoon that would send me back to the dark places where KD hid.  Bored sat waiting for the nurses to bring Freya’s medication, I was browsing through Facebook, just flicking through the News Feed half-heartedly.  And there it was, a picture of a little boy that had been posted in one of the Kawasaki Support Group pages.  His name was Max, and the post was from his parents asking to ‘pay it forward’.  He had had KD, and it was the anniversary of his death.  I felt a familiar fear envelop me and I sat and cried at the reminder that this disease had the power to take a life.

As I was getting into my car to drive us home, I heard the familiar ping of an e-mail notification and opened it to read it before I set off.  It was an e-mail from the KD specialist in Seattle.  We had been exchanging e-mails, and I had kept him informed about the response that I received from the specialist here in the UK.  He wrote:

“You never told me your daughter’s first name.  One last piece of important advice.  Management of KD patients requires a substantial bit of trust between parent and cardiologist.  She is in the danger period, as clots tend to form in the first month or so after acute KD…My British friends tell me that Bristol is a bit of a trip from Sheffield, but I have patients drive all the time several hours to see me as a KD specialist.  I think your daughter deserves the trip to Bristol to see someone who is confident and not negative towards anticoagulation in infants with KD” Monday 29th June 2015, 18:16

I think I nearly threw up. I was already feeling uneasy about the treatment Freya was receiving (or not), and here I had a KD specialist urging me to put my daughter in the car and drive her to Bristol.  It was all I could do not to program the Sat Nav there and then.  I drove home in a daze, confused and numb.  When I got home I fell apart, and I can remember sobbing to my husband, “She’s going to die Gavin, and I don’t think I can bear it.”

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