Showing posts with label appointments. Show all posts
Showing posts with label appointments. Show all posts

Saturday, 22 October 2011

Diagnosis Day

It was over a year ago now and I have not talked about the day William was diagnosed as deaf since the day itself. To anyone. It was, easily, the worst day of my life. And, as you may have read here, I have had some pretty tough days.

It was his fifth hearing test. We had had four inconclusive tests because the baby has to be asleep for the entirety of the testing which can take up to an hour. If you have had children you probably know that young babies do not sleep on demand and are easily woken, especially if you put 5 of these around their skull when they are already asleep.


And, despite people around us having their babies pass their hearing tests whilst awake but breastfeeding or being cradled into stillness, we were constantly reassured by the health professionals that our baby probably wasn't deaf, he just needed to be asleep for the testing to work.

So, on test 5, he managed to stay asleep. When he awoke, the audiologist was very quiet.
Shaun said to him "Did you get it?"
He said "It doesn't look good".
I said nothing
My head said "What the FUCK does that even mean????? Is he deaf or not deaf???? I don't want to know how it LOOKS, I want to know how it IS"

In time the audiologist told us that William had moderate hearing loss in his right ear and severe to profound hearing loss in his left. They are not able to test to the highest level of sounds in babies, lest they damage the hearing (the irony is not lost on me) so we won't really know about his left ear until he is older. For now he will wear hearing aids on both ears. If he turns out to be profoundly deaf in his left there will be no point in a hearing aid on that ear.

My world had literally stopped turning. My heart had broken into more than a million pieces. I have never felt grief or sorrow or pain or guilt like it. I kept him close to me and sobbed 'I'm sorry, I'm sorry' over and over again. My poor baby.

I was told I needed to take him to hospital to have blood tests taken. I did not need an appointment, I just had to rock up and they would do it. No time to waste, I thought, I'll go now. This was one of my poorer life decisions.

It took me an hour to get to the hospital.

Blood tests at the hospital are on a ticket system. You take a ticket, you wait, they call your number off you go. I waited for an hour and a half. William did a poo. A poo that went all the way up his back, requiring a change of clothes. I couldn't fit my buggy in the toilet to get to the change table. By the time I had got in and changed him completely, we had missed our turn.

I went up to the curtains and pleaded, begged, that I didn't have to take a new ticket, that they would fit me in. The looked at me and said 'you or the baby?' I nodded 'the baby', the response 'we don't take blood from babies'.

I sobbed. Standing in the middle of a crowded hospital I sobbed and sobbed until I couldn't breathe. My baby was deaf and I didn't know why. All I knew was that it was my fault and that by not getting these blood tests I was failing him, again.

I found a reception desk and begged them to help me, to tell me where to go, to give me an appointment, to make the day easier. They sent me to paediatrics.

Paediatrics are obviously used to hysterical mothers because they knew how to look after me, to calm me down, to make it better. There was another long wait and eventually they took blood samples from the back of Wills hand and we left, still crying.

I got home at 5.30 that evening. Our hearing test appointment had been at 9am.

That was the longest day of my life.

The next few days, weeks maybe months even, I remember crying a lot. Sitting on the floor and crying. I remember thinking I would never get up.

It breaks my heart to think of how impossible that day was but it mends it to think of how far we've come. It's been a battle of course but we have a beautiful, smart, engaging little boy who runs and signs and talks and communicates and laughs and who loves life and who makes me so glad I did get off that floor and carry on because he is so very, very worth it.

Tuesday, 30 August 2011

I mean, seriously?!

I am going to start a 'series' (get me!) about things that happen that make me think 'I meeeeaaaan, seriously?!'

I mean, seriously?! Thought 1.

Our Government are trying to save money because of the mass of debt they have managed to build up. Fair enough but someone should probably tell them about St Ann's Hospital in North London.

I receive a letter in the post telling me William is due for a revue appointment with a number to call. I call said number and explain the letter to the receptionist.
She says: 'I'll send you an appointment in the post'
Me: 'Can you tell me when it is for?'
Her: 'No, you'll receive a letter in the post'
Me: 'And if I can't make that appointment?'
Her: 'Call back and we'll send you another appointment'
Me: 'Right'
Me (in my head): thatisthemoststupidstystemihaveeverheardofwhatareyouanidiothowdoesthatevenmakesenseyouarewastingsomuchofmyprecioustimeandyou'veruinedmydaybymakingmemad

So, just so you are clear, the NHS, in their job culling, hospital closing down, cost cutting ways have approved a system where
a) a letter is sent out. COSTS - paper, ink, energy from PC, energy from printer, labour costs, postage costs
b) I call them. COSTS - my phone bill
c) another letter is sent out COSTS - paper, ink, energy from PC, energy from printer, labour costs, postage costs
d) I probably can't make that appointment what with all the other appointments, speech therapy, sign language lessons, teacher of the deaf lessons, playgroups, swimming etc, so I make another call COSTS - my phone bill
e) yet another letter is sent out. COSTS - paper, ink, energy from PC, energy from printer, labour costs, postage costs

I mean, seriously?

Why not call me, offer an appointment and we can discuss and conclude right then and there? Fools.