Switch On – Part 2 of 2 

Switch On – Part 2 of 2 

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After our unexpected hospital visit one week post op, things were pretty much smooth sailing on a physical level for Oli. It was a very busy time for us as Oli started crawling.

He really was like any other typical 6 or 7 month old baby.

Mentally and emotionally however, it was a rather trying time for Daniel and myself. Being in the middle of Covid there weren’t very many flights coming from the UK to South Africa on a weekly basis. Why did this have such a huge impact us? Well, Oli’s “kits” the bags containing his processors and all the parts of his cochlear implants had to come from the UK. So we had the cochlear implant distributer in South Africa trying to get the “kits” to us ASAP for “switch on”.  At the same time, we were fighting with the insurance company. We had been approved for “simultaneous bilateral cochlear implants” BEFORE the surgery and when it came time to pay, our insurance company said that they would only pay for one! The stress that we as parents felt at this point was something I can’t even begin to describe. We called every day. After three weeks of back and forth between the distributor, insurance company and ourselves, there was STILL no payout. We were lucky enough to be able to borrow the money to pay the balance so that we could get the “kits” released by the distributor and have Oli’s switch on continue as planned.

The day of activation I remember feeling super excited yet also very apprehensive.
Exactly like when we got his hearing aids, we were told not to expect anything. We drove to Paarl (about an hour from us), where Tamara our audiologist’s office was. When we arrived Jenni, our speech therapist, had also come through to be with us. We sat, trying to social distance as best as we could in the small space we were in, and witnessed Oli hearing with cochlear implants for the first time.

We were given Oli’s “kits”, two backpacks full of parts, super overwhelming. Tamara went through all the parts we would need initially.  The processor, batteries, mic covers and coil protectors. How to switch it on and off, charge the batteries and use the drying box. We went armed with many toys and snacks so keep Oli busy.

Again, we had another “textbook moment”. He reacted immediately to Tamra knocking on the table, and turned his head in the direction of the sound, instantly. It was such an incredible moment and also such a huge realisation as to how little he could hear. Oli was such a trooper, I can imagine it was pretty overwhelming for him. However, I think that I shed more tears than Oli, he really was very chilled. At one point, he had had enough. He was after all only 7 months old and after some breast feeding, he settled again.

We left that appointment, walking to the parking lot grinning from ear to ear but also overwhelmed, apprehensive and a daunting feeling of what next. Once in the car, Oli slept the entire one-hour car ride back to Hopefield. Daniel and I were in awe.
We couldn’t believe that this day had come and gone, so we heaved  a huge sigh of relief but also wondered what’s next?
We had come this far and now the hearing journey started for Olipop and our family.

Switch On – Part 1 of 2 

Switch On – Part 1 of 2 

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The first night with Oli was a bit bumpy.  He did sleep, but he was uncomfortable and he did scream a bit. The most awful thing about it all was trying to get the antibiotics into him. Why do they make children’s medicine taste so bad? 
 
Sunday during the day he was pretty much back to his normal self, other than the tight bandage around his head and the swelling. We were so careful, we built a whole pillow fort around him on the floor so that if he happened to fall over he wouldn’t knock his head. 
 
On Monday, the 18th of May, we went to see Dr Naude, the surgeon, and she removed his compression bandage. It was not something that he enjoyed as she had to push a bit on his forehead to get the scissors under the bandage. Poor thing, you could see the relief when the bandage was off. 
 
I didn’t know how I was going to feel when I saw his implants for the first time. At 6 months, Oli still didn’t have much hair. I remember seeing the black pen marks on his head, which the surgeon apologised for. Of course, something like that doesn’t phase me at all. She was marking exactly where she wanted the implant.  She was just doing her job.

His head was initially still very swollen but you could see them. You could see the implants under his skin on either side of his head. The surgeon asked us to please not push on the implants and to leave the bandage on the incision till we see her next week. Obviously, it went without saying that we didn’t want him to knock his head either. The implants are rather robust and he has knocked them before BUT not right after he received them.
 
We went back to Hopefield, about an hour and half away from the doctor, after that appointment. Oli was, at the time, our surgeons youngest patient that she had ever implanted. As I said in a previous post, the implants are small, but his head, which was big according to the green line in his clinic book, was still a baby head. I was just so grateful the surgery was over, but then came the concern of making sure he didn’t fall on his head. He was learning to crawl and so was moving a lot and rolling, pulling himself up and losing his balance. Daniel and I were nervous wrecks! 
 
In the early hours of Friday morning, May 22nd, Oli woke up and just wouldn’t settle and he was cold. Cold and shivering. I called Dr Naude at about 2:30am and she said she will arrange with the ER that we go straight through to the paediatric ward, leave now. As this was in the middle of COVID, she didn’t want us hanging around in the ER. The Dr’s concern at this point in time was possible meningitis. I called my mom to let her know that we were leaving and she came to quickly say goodbye. While she was trying to settle Oli he threw up on her, one massive vomit, a mixture of blood and snot and saliva and then settled down completely. 
 
He settled down so much that he slept all the way to the hospital and the whole time we were there. He had blood tests done, the paediatrician checked him out, the ENT surgeon checked him out and he was absolutely fine. We were shattered but so relieved that he was fine. 
 
Join us next week to for Switch On Part 2 of 2. 
Cochlear implantation – Part 2 of 2

Cochlear implantation – Part 2 of 2

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After collecting myself, I walked back to the paediatric ward. I gathered some of Oli’s things and then went back out to the parking lot where my mom and Daniel were. 

As I came out into the dark parking lot, Tamara, our audiologist had just arrived. She gave me a big hug, prayed with me and then went on her way to join Oli in theatre. I kept walking back to our car where Daniel was on the phone with my dad in the States. I couldn’t talk to my dad now, I would just cry too much. I got into the backseat of the car and we drove back to the apartment. 

Leaving Oli at the hospital was gut wrenching, it went against everything in me, to leave him alone at the hospital while he was in surgery. However, Daniel and I weren’t able to be together in the hospital and the apartment was literally 5 minutes down the road. Tamara, had said she would keep us updated throughout the whole surgery and let us know when to come back. 

Being without Oli was a strange feeling. In the 6 months since his birth, he had been with me every hour, except for 8 hours when I was in surgery. I didn’t really know what to do with myself.  We tried to watch a series; I tried to read a book; We tried to chat as though our son wasn’t lying unconscious on the operating table just down the road but nothing was working to help take our minds off it.

Four hours into the surgery, Tamara let us know that the right ear was done and looks good. What she meant by looks good is that she was able to get a response from all the electrodes in the theatre. Now onto the next ear. Another two hours passed and I just couldn’t anymore. Daniel and I drove back to the hospital and waited in the car in the parking lot. Another lovely family, whose daughter was implanted a year earlier, contacted me to see how we were doing and then asked if they could quickly stop by. They came and met us in the parking lot, masks on, socially distant hugging and brought us a whole bag full of sweets, chips, cool drinks, water and magazines. They knew what it felt like. 

Just short of 8 hours after the operation started, Tamara and the anaesthetist let me know that they were done with the left ear and were now busy doing some testing. They sent a photo of his X-ray to show us the placements of the cochlear implants. I went back into the hospital into the paediatric ward to wait for Oli. As I sat down in his room, a nurse came in and said “let’s go get your little man!!” As we walked through the doors, I first saw the surgeon, she looked tired. I hugged her and thanked her for everything. She was being called into an emergency in the ER and would check in with us later. Then they rolled Oli up in one of the those crib cage things. His little face was so swollen with the bandage around it. He was already awake and was just watching us. 

We went back to the paediatric ward, where he woke up a bit more and I was able to breast feed him. Within in an hour he had had a wet nappy and so we were sent home, back to the apartment. This was Saturday evening.  Our next appointment with the surgeon was Monday morning, to remove the compression bandage.  

Cochlear implantation – Part 1 of 2

Cochlear implantation – Part 1 of 2

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It ended up being just 9 days between Oli’s testing and the operation. If I think back to that time, it really was a complete blur.

We had started our journey at The Hearing Institute but because we had moved ENT’s and decided to go with the Cochlear brand we had to find a new audiologist. This was a very emotionally difficult decision.  Not easy at all. 
Julie, our audiologist at The Hearing Institute, had been with us from the beginning.

Tamara, our new audiologist, was recommended by an old client of mine. I had only spoken to Tamara on the phone before Oliver’s testing on May 8th. She had helped set it up and had another practice do the sedated ABR for her. On the 14th of May, two days before Oliver’s operation, Tamara drove over an hour to us in Hopefield. We got to meet each other and she explained the whole cochlear implant process to us.

I recall feeling so overwhelmed that this professional would go completely out of her way to meet us, explain every detail to us and assure us that she would be in the operating room with Oli through the whole surgery. She showed us a zcochlear implant and it was pretty unbelievable that this small thing, although rather large compared to Oli’s head (and he has a big head), would give him access to sound. It was at this time that we also got to choose the colour of his processors and all the extras for the kit. We said our goodbyes and “see you in two sleeps” for the big day.

The next two days, involved packing our bags for a week’s stay in Cape Town.  My mom’s friend had generously offered the use of her apartment which was just down the round from the hospital. My mom had also offered to come with us and stay with us in the apartment. It was welcomed by both Daniel and I as we really didn’t know what lay ahead.

We left Hopefield on the 15th of May so that we wouldn’t have to do the long drive on the morning of the 16th.  We had to be at the hospital at 6:00am. My mom waited in the car while Daniel took me to hospital entrance. He wasn’t able to go in with me due to COVID and the one parent rule. So a nurse helped me with the pram and all my bags.  We didn’t know yet if Oli would be staying over after the operation or not. They took Oli’s vitals and he was a pretty happy chappy. He had never really taken to the dummy (pacifier) but in the last two weeks with breast-feeding being withheld he decided to give it a chance.

A nurse came to fetch us and take us to pre-op.  When we got there I changed into scrubs, had those little things put on my shoes, a hair-net and was ready to take Oli into the theatre. While we waited we met the anaesthetist who was lovely and also very reassuring. All was going very smoothly until a nurse walked up to Oli and thought it would be funny to pull his dummy (pacifier) out of his mouth…well Oli didn’t find it funny at all. He started crying and was pretty inconsolable. Finally, after a while, he calmed down.

Another nurse arrived and said, “its time”. I remember feeling the tears welling up in my eyes, but my head saying don’t cry, you have to be strong for Oli. We walked into the theatre and the anaesthetist showed me how to hold him while they put the mask over his little face. Oli fought it and so they needed to give him a bit more and then all of a sudden he was fast asleep. Things moved very quickly after that, the surgeon Dr Naude, reassured me and said she would love to hug me but can’t as she couldn’t break the sterile field. Obviously, I understood that.

The nurse led me out of theatre and, as the doors closed, I started sobbing.

To implant or not (Part 2 of 2)

To implant or not (Part 2 of 2)

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“Mrs Wasserman, everything looks good, Oliver is a candidate for cochlear implantation, we have the theatre booked for two weeks from now.”

I was sitting next the crib waiting for Oli to fully wakeup after the having all the tests done. It had been a rather emotional 4 hours.

We had a very upset 6 month old who didn’t understand why he couldn’t breastfeed when he wanted to. He had exhausted himself with all the crying, that by the time we got to the radiology department he was fast asleep. He had his CAT-scan first, then MRI and then was moved from radiology to the paediatric ward to have his sedated ABR.

It was a bit of a whirlwind because it apparently wasn’t the way that things usually worked. I saw a very unhappy nurse on the paediatric unit. Children are not to be intubated in the ward, they need to be in PICU. It was all cleared up and the appropriate personnel was at Oliver’s side to make sure all was ok. 

Then came something that I was not really prepared for, AT ALL. The audiologist performing the ABR, who was not someone I knew, and let’s be honest wasn’t the friendliest person I had ever met, (I suppose you sort of expect friendliness in times like these), walked up to Oliver and started putting the electrodes on him.  He started moving, then he started choking on the tube in his throat. The anaesthetist quickly gave him some more medicine and then rushed over to me. She expressed such concern for me and explained that he was very lightly sedated to do the scans as no one was touching him, when the audiologist however touched him it startled him and he needed to be sedated a bit more.

She also said that parents are not usually present for tests like these as it can be rather distressing to see your child intubated. She recommended I go and sit in the main entrance of the paediatric unit. I called Daniel, who was waiting outside. It was no-ones fault. I suppose if I wanted to blame anyone or anything it would be COVID.  Everything was turned upside down. Nevertheless, it was and still remains one of the more traumatic things that I have ever been through. 

The nurse came to call me no more than twenty minutes later and there he was lying in the crib, still sleeping. The audiologist said the test was done. I asked her if it confirmed the severe to profound loss in the right ear and profound in the left and she just said both sides are profound. That was it!  No comforting, no explanation, except that we would hear from the doctor soon. The anaesthetist was amazing. We discovered that her son was born the day before Oli, but didn’t have nearly as many teeth. She stayed by my side for about thirty minutes until Oli woke up and wanted to breast feed immediately. 

That’s when my cell phone rang; that’s when we got the news and that’s when the decision was made to implant Oliver.