That Was The Day That Was

So that’s it done then. Friday came and went. I can’t imagine what it must have been like for Alice. She arrived at Nicholl ward announcing her arrival to everyone she met with “Hello everyone”. I’ve rarely seen her so excited.

Alice gets checked in

As the hours ticked by – we arrived at 10am with surgery due at 1pm – she started getting a little more nervous, wondering what all these people coming to see her were doing and why they kept sticking things to her.

Local anaesthetic

At around 1:30pm Alice was taken down to theatre, ready for the off. By this stage Alice was starting to get very suspicious. Alice’s mummy and I were wrecks.

Waiting to go in...

Alice was as good as gold. She didn’t even need the gas to send her to sleep this time – she was happy for the doctors to put the canula in her hand and to get the anaesthetic that way. And then she was asleep. And for us, then came the waiting game.

Originally we were told the surgery would be around two and a half hours. Alice’s last surgery lasted around five hours, in large part owing to the testing they did on her new implant to try to get an indication of whether it would be a success or not.

Just before Alice went in it was suggested that the surgery would be more like three and a half hours. As it transpired, from waving goodbye to seeing Alice in recovery, it was four. Another four hours to kill in Tooting. At least St. George’s has a nice coffee shop now, so we sat there and read the papers before dropping by the Audiology unit to collect a whole bundle of new covers for Alice’s new ears. Pink ones, Zebra striped ones, flowery ones. Alice had met another girl in the unit a couple of weeks ago who had a pink processor and has been very jealous ever since, so as a surprise for her we went to get them ready for when she woke up. Coincidentally, the same little girl had had her second implant fitted the same morning in the same theatre.

At 530pm our buzzer went and it was time to collect Alice from recovery. En route, we bumped into David Selvadurai in the corridor. We had begged him before the surgery to bandage Alice in such a way that she could still wear her other ear. David tells us this is the first time he had done this, but he managed and for this we will be eternally grateful. Alice gets very distressed these days when she can’t hear and knowing it would be at least 16 hours before her bandages were removed, the thought of her having no hearing didn’t bear thinking about. But manage it he did.

Alice in recovery

Recovery last time round was easy. Alice had been sat up in bed watching the world go by when we arrived, almost as if nothing had happened. This time was different, she was very distressed and confused. Periods of sleeping were interspersed with periods of hurling herself about. By 6pm we were back in the ward and a long evening began. Poor Alice didn’t tolerate the anaesthetic well at all this time and was very sick all evening. I finally left for home at around 11 when she had finally settled and managed to keep some water down.

Peace at last

Alice slept all night and after breakfast the next morning was starting to get back to her usual, chirpy self.

That's better

By 1030 the bandages were off and by 330 that afternoon we were home. Since then she hasn’t looked back. Alice is….well just Alice really. As last time, you wouldn’t know she’d been through surgery two days ago. She helped us repaint her bedroom pink (to match her new ear cover) and hasn’t had any pain killers since the day after her surgery. The beauty is that this time round she can tell us if she’s sore, but nothing. The girl is a walking, talking miracle. I am so, so very proud of her.

No child should have to go through what she has been through by the age of four. But Alice takes it all in her stride and just gets on with life. She is a wonder.

And now the waiting game. She will get her new processor in around three weeks and I am so excited for her. She is excited too. We can’t wait.

All I can say is thank you so so much David for what you have done for Alice and us. You have changed her life forever and, in so much as doctors ever can, have performed a small miracle for our daughter. For that we will always be grateful.

New pink ear

Alice we love you so and you amaze us every day.

Our Beautiful Alice

“Little Ear”

So Alice has a new ‘Little Ear’. Sadly this is nothing more exciting than a new, high-powered hearing aid she will have to wear as part of her assessment for her ‘Proper Ear’ number 2.

Remarkably, she seemed to be hearing something through it when it was first fitted last week, but since then nothing. Inevitable really. It still seems that Alice’s ANSD means her hearing deteriorates the more her ears are stimulated. Her implanted ear clearly now bypasses this problem, but it does add credence to Tony Sirimanna’s suggestion that she might have a problem with depletion of the neurotransmitter at the synaptic junction to the auditory nerve (I think I know what that all means).

Anyhow, for the first week she wore it with some pride and showed it off to everyone at school. Now, as she is getting no benefit, she has developed an annoying habit of hiding it around the house so we can’t find it and put it back on. We knew this would happen, but we are still trying our best.

Surgery could be as soon as early June if all goes well, which I think is a good thing. It would give her the School summer holidays to begin her adjustment and to get used to having two ears at last. I still don’t like to think about it. Surgery is never pleasant, least of all on one so young and I don’t think Alice is yet old enough to understand what is in store for her.

On the positive side, her speech continues to improve every day. She has become something of a singer, although I do think we need to teach her some new songs as all she seems to do is repeatedly recite the ones she learnt for her Christmas Nativity at School. We now have a CD of them in the car and it does feel a little odd driving along listening to songs about how “Jesus was born in a stable….” in March.

Mind you, given her less-than-perfect hearing, Alice seems convinced that “Jesus was born on a table”. It makes me smile anyway.