DRESSINGS COMING OFF AND A VERY GENTLE WASH

Prior to the dressings coming off there had been three weeks of total anxiety for my family - on some visits I would not even know they were there and on others I would try to tell them how silly they looked in their "duck" masks.

Learning about Stevens Johnson was a long and difficult task - each day I count my blessings that the staff at Flinders, prompted by the young eye doctor, immediately recognized what they were dealing with and swift action was taken.

I always knew I was special - but there is a one in a million chance of getting Stevens Johnson - so that makes me "a one in a million girl".

The mortality rate is extremely high and when the difficult days were over the teams of Doctors talked with me and expressed how concerned they had been for my life. Truly I was not aware of how ill I was until this was all over.  John had been in on several meetings with the top Medical staff and he kept the girls informed and on top of things.

I have vague recollections of some of the 5E Angels waving to me from the doorway and sending notes in for me.  I remember snippets of the stories they would tell me about what was happening in the world and in their lives.

I remember being lifted and rolled by a team of six staff - three on each side and being placed on a Hover Matt - similar to this one.

http://www.youtube.com/watch?v=5ASVQODzwQA

This was done for ease of changing bed linen and to save the staff having to lift me - my skin was in such a poor state it would just tear.  

Toileting was an issue - I had a catheter in and using a bed pan was a nightmare.  I would delight in the sponge baths that the staff were able to do for me and the time and care they took with my mouth and teeth was wonderful.

There were little "taps" in my dressings through which the nurses had to inject fluid to keep the dressings wet  - they were right up to my neck and I recall feeling like I was choking.  The pain when this fluid was inserted was excruciating and I would scream.   The staff dreaded doing it and felt awful and I dreaded it too.  This took place every two hours day and night.

A time was set aside for the dressings to come off and all the equipment and fresh dressings were assembled and it was time to begin the "unwrapping"

There was the anesthetist with his equipment a Senior and a Junior Nurse and Margie - Wounds Management Coordinator.  The stage was set. It was time.

Margie told me I was in control of this and if it was too painful and I could not manage it I was to let her know and they would then do them in theatre again.

With morphine administered and the Nitrous Oxide ready, we started and it was a very slow process - it took over two and half hours to get the dressings off and I was treated with great dignity and was able to cope with the pain.

It was all worth it - because when they were off and staff on their way to lunch breaks and other tasks, Margie gave me a very beautiful bed bath and I was put in a gown and slipped back into bed.  I slept for a few hours I think.  It was hard work for Margie and for me too.

All was looking well apart from a couple of spots on my arm which had yet to heal and they still are different to the rest of my skin - perhaps they had gone deeper.

Three times a day I had to be rubbed all over with a lubricant to moisturise my skin and this was okay - I had lost my dignity a long time ago.

The day came when I was told it would be okay for me to go back to 5E and what a day that was - everyone was popping in to say Hi and to see how I was doing.  It was onward and upward from there - I was back "home" and making progress again.

Throughout this entire drama - and it was a drama believe me - my new liver had served me very well and kept me alive and I was indeed grateful and thankful to be alive.

From here it is onward and upward but with a few more hiccups.

Please come back and read the rest of my journey - it isn't like this for every transplant patient but this was my journey and this is my story .

Love and hugs,