Problems with the cochlear

Sat at home in tears...

Daisy has woken up not being able to tolerate her left cochlear, she screaming out in pain and saying its hurting! As you can imagine worst feeling for us as parents as we've never been told this would or could happen. 

First thing I did was ring the doctors so they could check in her ear to see if there was possible ear infection. Once booked the appointment I message Donna and Victoria and straight on the phone to Nottingham Rope Walk House. Where they advised that I should go to her doctors appointment check behind the hear and get the doctor to ring queens while we was there and see what they advise us to do next.

Sat in the doctors worried what was going to happen. Will she need it taking out? What sound is she hearing? like what the hell is going on!!!

Deep breathe Emily...

Doctor checked both ears and they said there was a lot of wax but didn't suspect an ear infection. Rang Nottingham and they advised us to go to Children's A&E over at queens.
That was it worst thoughts ever going through mine and brads head! car journey there felt like it took forever.. hardly spoke in the car as we just didn't know what to say to each other during this time. 

Arrived at queens and was greeted by a nurse who checked over Daisy's obs and checked behind her ears for any swelling, which they noticed there was slight swelling to the right but nothing to concerning. Still no sign of an ear infection, spoke to a ENT consultant and a surgeon which they went on to say that they think it is the programming. Which i didnt get, how does a program change over night? she has been fine for month with this new setting, no problems. Went fine all day the day before and went to sleep ok. How does this change?!

After spending 4 hours in a hospital which was pretty pointless in the end but not at the same time we came away with no answers. Feeling very deflated and not sure what to do next. 

Got in the car and rang back up the rope walk house to try and catch Kim before she leaves. Luckily she was still there and she was puzzled by the response from QMC. She'd never heard of this happening before. She asked a number of questions and we was said no to them, so she was even more puzzled to why this was happening. Thankfully she was able to get in the following day to see her and check the head and programming and see if she could do anything to make Daisy more comfortable, so she could wear her left cochlear. She gave us a few things to do when we got home to see if its the implant or Cochlear. So we had to turn off the cochlear and put it back in her head to see if she would tolerate the cochlear on her head while it was turned off. Which she did. So that kind of ruled out in the internal part. Turned it back on but on the lowest program and turned right down to 1 and she would scream out in pain! worst feeling ever seeing you sweet girl in so much pain, when all she wants to be able to wear it and go on as normal. 

Cant imagine how it feels for daisy only basically having half a hearing.. after 2 years of hearing out both and suddenly only one. It was very hard communicating to daisy with only on cochlear on and working. 

she would come up to us and say poorly ear can you fix it! Heart breaking.. but we knew it would get sorted some how, how way!

The next day came and we tried her left cochlear again and still the same reaction, dropping to the floor in pain and saying mummy its poorly.

12:30pm and we've arrive at the rope walk house for our appointment. Very nervous! just hoping they can sort this problem out quickly. 

sat in the audiology room and Kim sets up the equipment, Daisy is very nervous about putting the cochlear back on, but re assured her that I would be turned off. She went down her programs on the left and made it more lower and soother to see if she could tolerate it. Turn it back on and Daisy was over the moon that she could hear a little out of her left side.
But Kim wanted to see what happened and wanted to do extra tests. But we had to wait until 14:30 when she was free to see us again. which we didn't mind at all. We went into the town and grabbed some lunch and then headed back up.

Walking back to the Rope walk house we felt confident that would be walking away today with daisy having some sort of hearing in the left side.

Back in the room and Kim is starting from the basics on the left side and heading back up again on the electrodes. Seeing how far daisy can go up to. There was a few pitches Daisy didn't like and shed tap her head when it got to much. Turns out Daisy's Programming did have to be turned down. She couldn't tolerate the high sounds. Kim set some different programs so would could gradually go up but not to the point where she was at. But it was a start! Kim said she wanted us back within 3 months to try and get that left cochlear back to where it was, and if not try different ways.
To be honest we was just relived that was leaving there with both cochlears working. Daisy was loving having them both working again. And it meant we could calm down and stop worrying a little bit.

Kim rings us up every week to see how Daisy is getting on as she still doesn't know what actually happened but Kim has been in touch with cochlear and they said if it was to happen again then they would want to see her themselves.But all was going good as we was able to turn Daisy to program 1 and volume 10 within a few days, which was Fantastic!