I recently realized I haven’t updated about Katherine’s cochlear implant since we activated it back in May. A lot has happened and unfortunately most of it has not been positive. It’s been a one step forward, two steps back process at the moment.
The weekend after we activated Katherine’s implant we had to rush her to the emergency room on a Sunday evening. She had a rash and swelling over the incision site all day but while I was at church the swelling got significantly worse and there was concern that her thought was being affected as well. They decided she was fine and was just having an allergic reaction unrelated to the implant but I’m still not convinced there wasn’t some type of correlation as we’ve struggled with infection ever since. The next day the doctor drained the swollen area around the site of the implant and cultured it. The culture came back as staph and we started her on antibiotics. They sedated her and cleaned the area around the incision out and continued her on antibiotics. Soon after her surgeon left for the States to tour cochlear implant facilities there and I left for my visa break as well.
While I was in the States Katherine continued to have problems with with the infection reoccurring. Eventually after about a month of going back and forth to the hospital they thought they had resolved it. When I got back at the end of June she still had some drainage from the incision where they had cleaned the area out back in May. Luckily her surgeon had just returned from the States and I was able to take her back to him. At first they thought the infection was reoccurring because Katherine wasn’t wearing her external processor so despite the fact I don’t think there was a correlation I started having her wear the processor more. But the drainage persisted so I took her back to the doctor and he decided to sedate her again and redo the entire incision. During the surgery they found tons of infection and there was a biofilm present out the area which was essentially making the infection reoccur.
After the surgery the incision was actually looking really good. Katherine had a small area of infection reappear but they drained it and it looked like it was healing. I was hopeful that we were over this hump and she started wearing her processor and working though the programs. She had some problems keeping the processor on but we were getting creative with bandaids. When Katherine was wearing the processor she would get really quiet and seemed to listen to everything. She was tolerating them for about 3 hours at a time and was doing well with them.
I started noticing earlier this week that there was more drainage and swelling by the incision site. I took her back to the surgeon and after waiting 3 hours every doctor in the ENT department (literally every single doctor in the department) pow-wowed and decided it was in her best interest to remove the implant. Katherine’s surgeon was incredibly kind and reassuring that it was nothing we did wrong and it just happens sometimes. He said he has done 1000 surgeries and had it happen 4 times. Sometimes it just happens through no fault of anyone. Staph is just a surgical risk and Katherine just doesn’t play by the rule book!
The current plan is to take the implant out on this upcoming Monday and then in a month they will go back in and implant the other side. Unfortunately this plan will leave her with no residual hearing essentially leaving her completely deaf whenever her implant os off. Right now she has some hearing in the left ear (very little but some) but after surgery she will have none.
Although it’s all been incredibly frustrating I still believe the cochlear implant is Katherine’s best shot with interacting with the world. I hate to see her in pain and have to put her through another surgery but right now it’s in her best interest to pull the implant out and start over. God has carried us through this whole process and will continue to protect and guide her. I may not understand why she’s going through all this but we’re choosing to trust and pray. Please join me in praying that we can get rid of this infection once and for all and that the other implant will be successful!