Joseph’s Story – Home Time

Nothing prepares you for walking through the doors into paediatric intensive care. As I think about those days I am not sure how we coped. I remember feeling like a robot – Just one foot in front of the other, just one breath at a time. I think your mind struggles to come to terms with the huge emotional upheaval and you have to turn into the most basic version of yourself just to survive.

You walk in, take your coat off, wash your hands and put on a plastic apron. Only then are you allowed to see your child. Joseph is lying in a nappy, unrecognisable as he is so swollen, ventilated, surrounded by beeping machines, a huge angry looking scar down his chest. Thinking back to this moment I am overcome with feelings of pride. My son is truly remarkable. I am unbelievable proud of the obstacles he has overcome and the amazing boy he is turning into everyday. I think this is partly why I started the blog. I have always externalised my feelings, always wanting to talk things through to make sense of them but I also think I want to shout from the rooftops how special my son is.

Joseph makes slow and steady progress in intensive care. Every day brings a new milestone. Reduced medicine, reduced oxygen – we have passed the first 24 hours. The swelling is starting to go down, the scar healing – we have passed the first 48 hours. Eventually Joseph is taken off the ventilator and wakes up. I am allowed to cuddle him. I can’t stop myself from smiling when I think about this. We did it! Joseph did it! I don’t think I was smiling at the time, I was completely shell shocked but a treatment called ‘eye movement desensitisation and re processing’ has allowed me to go back to these memories, re shape them and file them in the right place. This has been so fundamental to my recovery and I will talk about this more in another post.

Weeks have passed and Joseph has been moved from intensive care to high dependency and finally to the nursery; our last stop on the Freeman journey before we get to take him home. We are all tired but exhilarated at the thought of having our baby at home. I made a promise to Joseph on the 27th February that I would not go home without him and thanks to Scott House I have not had to. I will always be eternally grateful for this.

It is amazing to be home. However, we know it will be short lived. Joseph’s operation has kept him alive but we know he is deteriorating. We are told to expect something called ‘tet spells’ they are caused by a massive drop in oxygen in the blood. Joseph would go a deep blue colour and become very angry. We are told what to do when this happens – this is terrifying. All of Joseph’s illness so far has been managed by professionals and now it is just us. I do not feel ready for this new role, but I step up. I now see that this is Joseph helping me to become the mother I was always meant to be.

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