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JANUARY
06/01/2015

Wednesday 7th

Charlotte had a 2pm appointment at the South of England Cochlear Implant Institute. She had a check-up lasting around 10 minutes and the last plasters and stitches were removed, it was confirmed everything has healed well.

Samantha was then given a large black case containing everything we needed including the external Cochlear devices (similar to large hearing aids) , a remote control for them so we can alter her hearing levels, spare battery packs and instruction manuals. She then spent about an hour being shown and trained on all the equipment.

We were told Charlotte can wear her glasses again, and she was very excited to be given them and would not take them off all evening, she has missed them the last 3 weeks as her eyesight is probably as bad as Dad's. We have also not been able to give her a shower or wash her hair the last 3 weeks and have had to use a spray on dry powder shampoo and will probably give her the first one in a week or so.

Tuesday 6th

Today we received the full list of Charlotte's appointments at the South of England Cochlear Implant Centre for the next 6 months. We cannot wait for the initial switch on as Charlotte is clearly very frustrated and playing up all the time, especially during the night when she insists on turning every light on and moving around so we are not getting much sleep. I have had to remove the light bulbs from every light except the bathroom light. she is tall enough to reach most now.

There have been a very small number of cases where the implant does not work and we don't know what level of hearing she may have at switch on, every person is different. It could be anywhere from minimal to a good level, it can take 6 months to reach a significant level of hearing,up to 12 months to reach the "Speech Bubble" and 24 months to reach 90% plus level. We will have to be patient a bit longer, her Brain will need to re-learn how to hear and understand sounds but at least her Journey will start on the 16th.

  • Wednesday 7th January, Post Op check-up and Pre turn on training 2pm - 3.15 pm.
  • Friday 16th January, 2 – 5pm – Tuning 1
  • Friday 23rd January, 1 – 4pm – Tuning 2
  • Tuesday 27th January, 9 – 11am – 1 week assessment
  • Monday 23rd Feb, 11 – 1pm – 1 month assessment
  • Monday 20th April, 11 – 1pm 3 month assment
  • Tuesday 21st July, 1 – 3pm – 6 months
 
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DECEMBER
03/12/2014

Wednesday 17th

So, morning finally arrived and it was time to get all the final checks done in order for us to be allowed home. An X-RAY was needed, doctors checks were needed, the pharmacy needed to send her antibiotics, but finally at 2.30pm we had everything required for her to be discharged and we were on our way home. Just 24 hours after she had come out of the theatre, we were driving home. Just as well as you would never have believed that Charlotte had had the operation the day before and she was back to her usual cheeky self, which meant for mummy and daddy – being a handful.

As we arrived home, we could not believe that Charlotte has had the op, she has actually accepted the silent world for now, it is now obvious that she had minimal hearing left and was understanding much of what we were saying through Lip reading.

At 6pm Charlotte fell asleep, a first for Charlotte but obviously everything was catching up with her. But we were home, Charlotte was ok, the op had happened and now we could just sit back, Enjoy Christmas and wait for the big switch on at The South of England Cochlear Implant Centre in Southampton on 16th January 2015 at 2pm.

Tuesday 16th Charlotte’s Cochlear Implant Operation

So, after what has seemed like ages getting to the point of knowing that Charlotte was eligible for 2 cochlear implants the operation has come around ridiculously quickly. Her Journey started when she lost almost all of her hearing last February and then only 3 weeks after being given the green light the day of the operation has finally arrived.

We were surprisingly calm when we got up at 5.30am ready for the 6.30 am start to get us to Southampton General Hospital for 7.30am. Perhaps so because it has happened so very quickly and we haven't really had time to think too much. We waited until the final moment to wake Charlotte and dressed her in a lovely Christmas jumper. We set off, on the dot at 6.30am.

“Mummy, where we going” Charlotte said over and over and over again on the journey down to Southampton. She knew where she was going but for Charlotte, constant reassurance and reinforcement is needed. We have spent the last 10 days preparing Charlotte for what was to come. It isn’t easy with Charlotte. As she has learning difficulties, everything needs to be gone over time and time again and I prepared a book to help her understand what was going to happen.

By this stage, Charlotte knew that we were going to hospital, she would be going to sleep, when she woke she would have a big bandage on her head and may feel poorly, then she would have a drink and some biscuits and that Mummy and Daddy would be with her all day at the hospital and that mummy would sleep overnight. What I wasn’t sure of was whether Charlotte fully understood the fact that she would have complete silence until the switch on of the cochlear implants. She would lose the little hearing she had remaining in her right ear.

As we arrived at the hospital we were expecting to be waiting around for a late morning start but we were bumped up the pecking order when another child who was in for a more minor operation arrived with a cold, so before we knew it, Charlotte was in her operating gown, and on her way to the operating theatre. We had been expecting a midday start but she was taken to Theatre 9.45 am.

I (mum) went in with her whilst they gave her the general anaesthetic, still feeling quite calm, I hadn’t expected this. I thought I would be a gibbering wreck, but I actually had 100% confidence in the surgeon Mr Hellier who would be carrying out the operation.

We had been told to expect up to 8 hours waiting around so we had decided to keep ourselves busy. We got in the car and drove to Southampton City Centre and did some shopping to keep our minds off the wait. We also had a bite to eat and returned to the ward at 2.15pm, expecting at least another 2 hours wait. Within 15 minutes a nurse arrived to say whether we wanted to see Charlotte. I asked “Is she all done then”. “yes” she said.

You could never see 2 people move so quickly as we rushed to the recovery room to see her. It was at that point when I saw Charlotte with her head all bandaged up that it suddenly hit me. I became overwhelmed with emotion and was so happy to see her. We both were. There were tears and hugs but we had to pull ourselves together. We couldn’t let Charlotte see us like this as she may become scared.

After a bit of a wait, we got her back to the ward where she actually started to come around quite well. She was quite happy sitting on her bed and we talked to her about her bandage and she was ok with everything. She looked a bit dazed but found the strength to much on a biscuit.

Sarah, our key worker from AIC in Southampton came to visit and she commented that she had never seen a child come around so quickly from the operation. It was no surprise to us as we were used to seeing Charlotte bounce back. She really is an amazing child and we continue to be so proud of her. Alasdair left at around 8pm and it was time to try and get Charlotte to have some sleep. It was a restless night being woken by nurses checks, and other children arriving on the ward. You never get any sleep in hospital but Charlotte managed a little bit in between the disturbances.

Wednesday 3rd

On 3 Dec 2014, at 18:07, we had an email from Sarah from The Cochlear Implant Institute "It’s on for the 16th at SGH!", finally the news we have been waiting for since her hearing pretty much all went , for no apparent reason, over a couple of weeks last February.

She has a pre-op appointment at Southampton General Hospital at 4 pm on the 10th and will then be given an ECG and final examination on the 16th. Assuming everything checks out the 8 hour operation will follow the same day. She is due on the ward 7.30 am .

 
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NOVEMBER
07/11/2014

Monday 24th

Sarah arrived at 9 am for a home visit to go through the process of what happens next, and for us to sign the consent forms. She explained that it would be a slow and gradual process of Charlotte learning to hear again. she also showed us the device and some of the accessories we can get, the external part can be plugged directly into TV's, Ipods, Iphones etc and some can even be worn underwater.

The device would be switched on around 4-5 weeks after the operation and she would initially hear beeping noises, the varying pitch determining the letter or sound. Her brain would gradually adjust this so she will begin to hear speech and in time even birds singing.

It cold take as much as 6 months to make significant progress but in every case they aim to reach a level of 40 decibels, ("the speech banana"), across low and high frequency by the end of the first 12 months. Charlotte is now profoundly deaf in both ears and not getting anything at 90 decibels. The criteria for funding for implants is simply to be profoundly deaf with nothing at 90 decibels in either ear.The baby who was in the incubator next to Charlotte had cochlear implants over a year ago and has now achieved a level of hearing at decibels.

As Charlotte had a good level of hearing in her early years she may progress quicker than someone whom has been deaf all their life but the end result is the same. The Southampton Institute have implanted devices and transformed the lives of over 800 people from as young as 12 months old to adults in their 70's/80's, many of whom had been deaf for decades, if not all or most of their adult life.

Friday 21st

A phone call came through at 10.30am. It was Sarah from the South East of England Cochlear implant centre in Southampton officially confirming Charlotte has met the criteria for NHS funding (approx £44000), and that all the audiologist's had been in a meeting and recommended which make of implant device she should have.

There are currently 3 recommended Brands of implant Cochlear (Australia), Advanced Bionics (USA), & MEL-EL (Austria). They are advising the Cochlear implant brand, which is the oldest, for a few reasons.

  • Its easier to tune and that may be better for Charlotte.
  • Its more robust, and knowing Charlotte was we do if she has a paddy and throws them on the floor then they will probably survive the battering.
  • It comes with a remote control so we will be able to adjust the device if necessary.

It also appears that the operation will be quicker than we anticipated. We were originally told on Wednesday it would be 2-3 months wait for the operation date but they have now suggested it might be possible to schedule it for either the 16th December or the 6th January. We were edging towards the 6th January as after the operation Charlotte will have access to no sound at all and so may be distressed. At the moment with her hearing aid she does have access to a little amount of sound so we are worried about Christmas and her not enjoying it. We have now decide the sooner the better so are hoping the slot may be possible.

Sarah from the Implant centre is visiting us on Monday 24th November to discuss expectations. We know it won’t be an instant miracle but obviously, the more information we have the better. All of a sudden its real and although we are over the moon that Charlotte will now be having the implants, this excitement is mixed with trepidation. Let’s hope what is to come will all be worthwhile.

Wednesday 19th

D-DAY. It was an early start, up at 6.30am, heating had just kicked in, Charlotte was still asleep, Dad was still asleep, but I was up getting everything ready for the day. No change there then ! Today we had to go to Southampton University for more tests to try to ascertain whether Charlotte would be eligible for cochlea implants. We have been here before and Charlotte has always refused to co-operate and after her ABR test came back as inconclusive on one ear we really needed to get Charlotte to co-operate and demonstrate her hearing levels.

Our secret weapon: Charlotte’s teacher from school. It’s a well known fact that children obey their teachers – right ? As we all arrived at Southampton University I felt quietly confident that today would be the day we would find out for certain about Charlotte’s hearing levels. It had been decided that I would not go into the testing room, but instead would view from behind a mirrored window. Charlotte would be accompanied by her teacher and our support representative from the University. They started with a few tests with her hearing aid in, Charlotte needed to listen carefully. If she heard a sound she would need to do an activity, such as placing a toy man into a wooden boat. She was cooperating, then the big test would be to take her hearing aid out. At this point I recognised the early stages of tantrum mode – but with a swift stern “STOP” from her teacher Charlotte sat nicely and the testing began. Now, I felt a slight bit of jealousy that her teacher had managed to stop Charlotte in her tracks. If I had been the one saying “stop” then Charlotte would have cheekily replied “ NO”. However, this was no time for me to be envious, there were more important things at stake. I didn’t care who was making her do the tests I was just glad that she was co-operating and it appeared we were getting somewhere.

As I stood next to the audiologist who was controlling the sounds entering into the test room, I glanced down at the equipment. It appeared to me that Charlotte was hearing levels of around 70 decibels, surely this couldn’t be right ? We had expected Charlotte to be 90 decibels or below. That is where she needed to be in order to quality for funding from the NHS for cochlea implants. I was a little confused. In my gut I knew Charlotte’s hearing was bad and I was so desperate for her not to be just outside the criteria for a cochlea implant that I was hoping, for the sake of just 10 decibels or so that Charlotte would fall within criteria, so that she may get the funding needed from the NHS for 2 cochlea implants. With all the tests complete, I was then “allowed” into the test room with the audiologist, I gave Charlotte the biggest hug ever. I was so proud of her and she seemed happy that I was happy and equally proud of herself, which is Charlotte's way.

t was then that it was confirmed. Charlotte’s level of hearing fell within the criteria that she could get funding on the NHS to have cochlea implants. The decibel levels appearing on the machine needed to be adjusted by 25 decibels so in fact where I thought she was hearing 70 decibels, she was actually hearing at 95 decibels. After losing most of what little her hearing she had last February, it had been a frustrating journey but at last we knew, at least we can now move forward and at least Charlotte will get her ears “fixed”. It may not be in time for Christmas, as we had all hoped, but it will be soon.

Friday 7th

Charlotte’s CT scan results from 24th October came through today. Her consultant Mr Hellier reviewed them and wrote that both the cochlea's appear “normal”, which is good news as any damage may have prevented her being suitable for implants.

Charlotte was assessed last year at Great Ormond Street for the Selective Dorsal Rhizotomy (SDR) spinal operation to enable her to walk unaided. The Consultants however decided it was too risky , based on the results of a previous CT scan, which showed the Cysts left all over her brain as a result of her fungal Brain Meningitis infection,

He has made a comment that her right mastoid bone was better pneumatised than the left, so I it is possible Charlotte may have a slight cold at the time affecting her left side. The ABR scan confirmed there was nothing left in her right ear but they could not get a conclusive result in her left.

 
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OCTOBER
01/10/2014

Friday 24th

We arrived with Charlotte at the John Atwell Ward in Southampton General 8 am yesterday for her ABR,CT & ECG scans/tests. We should know the result of the CT scan in a few weeks but had a call early this morning confirming the results of the ABR scan. They confirmed Charlotte had nothing in the right ear so that met the criteria but the left ear was inconclusive. The Criteria for an implant is that hearing test show nothing at 90 decibels and we believe she may be just out of Criteria ie 85-90 in the left .

After asking for clarification about what happens next and asking why an ABR test she had at Basingstoke Hospital earlier in the year could not be used, We were sent the email below from the Audiologist at the University of Southampton Auditory Implant Service. She will now attend the Cochlear Implant Institute on the 19th of November for tests focusing on the left ear to complete the picture. If she is confirmed at 90 decibels in both then she will qualify for NHS funding otherwise we will have to raise approx. £44000 and go private. If she falls just short in the left ear ie 80/85 decibels then we can still try and fight her case for funding.

"Just to clarify the situation as it stands at the moment in the UK; to get funding for a cochlear implant (whether it be for one or two ears) the hearing levels must fall within the NICE guidelines for both ears."

"Indeed we always consider all previous Audiological results when trying to determine hearing levels. So yes we have looked in detail at the ABR results from Basingstoke. When we interpreted the results from Basingstoke what we found was that the test had not been done at a high enough intensity. So although we can see from these results that there had been a drop in hearing on the right, they did not allow us to demonstrate the right ear was within criteria. The ABR done on Thursday was done at a higher intensity. There was conclusively no response at this level on the right so we can now say this ear is in criteria. So in this way we are one step further forward. On the left side the ABR results from Basingstoke showed a clear response at 80 dB, this trace placed Charlotte out of the NICE criteria. The ABR on Thursday was again performed at the higher intensity and this time showed no evidence of a response but unfortunately due to uncontrollable electrical interference in the hospital, the traces were “noisy” so this has caused the traces to be interpreted as inconclusive. Although this is frustrating as it does not give us a conclusive evidence, it is again another step forward as is does not place Charlotte out of criteria".

"I have chatted with Sarah about what the plan would be if Charlotte does not co-operate on the 19th. I understand that Charlotte has regularly been performing the type of testing we require of her in her school and so if things don’t quite go to plan on the 19th we would like to have the next audiology appointment in school. Sarah will be in touch to discuss this further".

Charlotte , at the age of 7 years and 3 months, was also weighed in at being 19.55 kg, or in "normal money" 3.07 Stone.

Wednesday 16th

We have had notification of Charlotte's next big Appointment on her Cochlea Implant Assessment Journey in Southampton Hospital on the 23rd October which we will post an update for. She will spend the day in the Children's ward and have a CT Scan, ABR Scan and Heart Scan all under general Anaesthetic.

 
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AUGUST
13/08/2014

Wednesday 16th

We took Charlotte back to the South East of England Cochlear Implant Centre for 2 appointments. Firstly a repeat of the failed July Hearing tests 10:30 - 12:30 and then a medical 2:30, but unfortunately it was a repeat of July. They tried for an hour then gave up as Charlotte would not sit still in the chair and co-operate. She just had tantrums and crawled around the floor.

She still does not have the level of understanding needed to be able to ask her to sit still and let them do some tests, and until we achieve this we will not be able to go any further down the road of Cochlear Assessment. It is very frustrating for all and what with her hearing loss, severe learning difficulties and developmental delay this is a big set back. They needed the one hearing aid to be removed for the tests but every time we tried Charlotte would become hysterical and crawl away.

Mummy is returning here with Charlotte tomorrow for a 2 hour appointment with a psychologist as unless we can find a way of improving her behaviour so that she will sit still and allow tests to be done we can go no further forward.

 
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