After becoming a parent and being completely and totally technically unable to look after your newborn for weeks – the prospect of going home should be quite scary. For me the reality was I wanted OUT OF THERE!!! I was absolutely desperate to go home with Dominic, my own house, my own kitchen with vegetables, my own bath… I’ll be honest, it totally escaped my horizon that I was going to be so busy and sleep deprived – cooking a vegetable and taking a bath wasn’t actually going to be possible for over a week.
It sounds awful, but I wanted Dominic out of HDU (high dependency unit) and out of Oxford for my sanity. After 5.5 weeks I hardly had any marbles left – especially after we were only still there because ‘they couldn’t let us go home at a weekend’ . Monday was very very long. We didn’t actually escape until 7pm in the evening. This was because discharge was very complicated and because of all of Dominic’s issues it meant we needed teaching how to do his medication, what to do if…. and They needed to set up open access at our local hospital in case something happened with Dominic.
There was an entertaining moment when I was given all my frozen expressed breast milk… I managed to FILL my parents chest freezer and still have 27 bottles to collect! That is an incomprehensible amount of litres! James had to carry it all out to the car, I couldn’t even lift it.
So there we were, Dominic wearing real clothes – not just a hospital vest / sleep suit thing driving home. Although, for Dominic, really it was like moving house for the first time. We got home, played with Dom, dressed him in PJs fed him, went to bed… and then proceeded to get up pretty much every hour either to check he was still breathing or to help settle him into his new environment.
There is no ‘night time’ in hospital and it is never dark. We still, 6 weeks later, haven’t managed to get across this concept and are still getting up every couple of hours and are sleeping in a light room. Dominic, it transpires, is really quite scared of the dark – especially if it is dark and quiet. Weirdly though, instead of hospital sound effects found on you tube, he prefers the sound effect of a busy bar! Awesome for when we take him out to dinner with us.. he just falls right asleep!
So began the very long, very steep learning curve. I understood what had happened in hospital, but I was completely unprepared for the complexity of all his chronic conditions. Not because of the medical management stuff, but because of the admin it takes to physically deal with 5 completely independent medical disciplines or specialities. Especially as currently we are outpatients to 3 separate hospitals. It is a mammoth task to coordinate. I have a ring binder and a spreadsheet and a calendar and a task list and a set of medicine alarms – just to maintain the specialist stuff. When I get a call from the health visitor, or a letter about standard immunisations, or visit the GP for re prescriptions or to pick up goods from the pharmacy… that’s all on top. It’s the ‘normal’ stuff I have to make a concerted effort to remember. It’s also the normal stuff that takes the longest… no one has ever read the notes before you attend and even my ridiculously shortened summary takes over 10 minutes to explain before they start asking questions.
But hey! We are home and we are coping (after a fashion :-)) this will all make sense when I finish the blog on the current diagnoses… I promise!