Zachariah hasn’t been too well lately, as he awaits his gastrostomy and as it gets colder he is catching all sorts of things and collecting a few chest infections. Which for our children isn’t just a cold or an infection, it affects absolutely everything!
He’s had temperatures, seizures, drowsiness and has been unable to do any therapy for the best part of three weeks.
After numerous trips to the GP, we were sent to Hospital, straight onto ward to have him checked over there, who in the end sent us away with Suppositories to help manage the temps and sooth his throat.
To make things easier for me I have put together a little Hospital Passport for Zachariah, inside there is all the information the Doctors need to know about his condition, his medications and his needs, likes and dislikes.
The purpose of this document is to relieve stress from me in an upsetting situation and for them to have accurate information (I don't know about you, but I sometimes forget what Zachariah’s conditions are and I always end up pronouncing them wrong anyway).
It frees me up to discuss why we are there at this particular moment. So I handed it straight to the Doctor who walked to her station and began to read.
It wasn’t long until she needed her google app to help her as Zachariah’s conditions are quite rare.
She then came back over and started asking about Zachariah and to my annoyance she asked questions that were quite clearly covered in the booklet, like ‘can he talk?’ and ‘What can he do?’ - I mean what was the point in me spending all that time and effort creating a tool to help things go smoothly when at hospital if you don’t read it properly but instead bombard me with questions I struggle to answer?
So after going through all the basics, we eventually got to the point of why Zachariah was there and the wait for the Registration began.
A dear friend had driven us up that day so whilst Zachariah slept we enjoyed a little picnic and natter to brighten the mood. The nurses' station was literally opposite and we could pretty much hear all the on goings as they nicely shouted to one another in conversation.
The next part of the story is what made me write this blog today, it’s surreal and it actually made me and my friend have a little bit of a giggle.
A group of young, smart looking student Doctors came racing in and hovered around a lady at a computer screen.
The lady then began to discuss a patient and told them the patient had an underdeveloped brain, she then started asking questions such as ‘Do you know what Agenesis of the Corpus Callosum means?’ To which one of the students eagerly raised his hand and told her quite confidently it was that the bridge connecting the two sides of the brain was missing.
I mean I am all for learning, researching etc., but to do it so close to where we are sitting and to do when we are there at such unfortunate circumstances felt a little insensitive.
I explained to my friend that I would have been more comfortable if they came over and spoke to me and my sons condition, I understand that it is vital for Doctors to get as much experience and knowledge as they can, therefore I am happy to help.
It just felt so bizarre to have them so close having a lesson, as they weren’t the professionals that were seeing to him nor did they need the knowledge to help him get better.
I've written this just to speak about my experience at hospital, it's a diary account, it is not at all a rant to the hospital or the NHS, but simply an insight into the eventful life as Zachariah’s Mummy.
Much love xx
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