Yesterday Calvin had a pretty important Dr. appointment. His Cochlear implant has malfunctioned and we're not sure why. It started working sporadically at the end of August and by the end of September, not at all. I started with our audiologist and she tested the external part to make sure that it was ok, which it was. I was hoping that the problem could easily be fixed, but no.
It took some time and some effort and some tears but we finally got in to see a new Neurotologist here at Texas Children's hospital. This is the area where I start to miss Idaho so much. We had such an amazing team working with Calvin. True, Dr. Shelton was in Utah, but everyone that had already treated Calvin had a special place in their heart for him and really never made us feel inconvenienced by caring for him. That's not the case down here. His name on the schedule does not register any sense of excitement or joy for any practitioner down here. I feel very much as though he's just another patient. I miss the people who loved and tenderly cared for my baby when we were at our most vulnerable. They cried with us, and empathized with us, and I miss that sense of support and compassion.
I guess now the only thing to do is grow some pretty damn thick skin because everything I've seen about being here has led me to believe that I'm going to need it.
At our appointment yesterday I did warm up to our Surgeon, a little. When all this came down the pipes I put in a call to Dr. Shelton's office and was very touched by the fact that he took time out of his day to call us from home on a Saturday. He recommended our new Dr. and said that he knew him well. He didn't disappoint that recommendation. Dr. Williamson was warm and friendly, and concerned about the lack of attention his staff had given Calvin's issue. The crux of the situation is that it only takes 24 hours of silence for a kiddo to start to forget sound. With the amount if time that has already passed, Calvin has likely forgotten everything he learned and by the time his implant has been repaired, we will be starting at square one. He knew that, and I knew that, but I doubt his staff really gave a darn.
At any rate, we have some more investigating to do before we decide the next steps. Calvin will have another CT scan next week, and will have testing on his implant done by a rep from the Cochlear manufacturer to ensure that it isn't a hardware malfunction. This would require replacing the implant and would be a big deal. Let's pray that this isn't the case. In the mean time I am gathering as much of his medical history as I can from everyone who has ever treated him.
I started this blog with the hopes of educating and helping other parents. If I have any advice to give at all, it is make frequent request for your children's medical records from everyone who has treated them. They're typically available 2-3 weeks after your kiddo was last seen. Put them in a binder and take it with you to every appointment. Also, take notes at EVERY appointment. Sometimes little things turn into a big deal and being clear with your understanding is essential to helping the physician's determine the best treatment, and it saves time and possible repeat appointments. Ask for the business card of every Dr. and nurse who takes care of your kiddo. If you have a complaint, you'll have their information handy. More importantly, if you want to thank them or let them know they're appreciated, it's easy to remember who they are.
I'm not excited about repeating his surgery, and I'm disappointed that this has happened. It definitely feels like one step forward, one step backward. Just when we make progress in one area, we lose so much ground in another. I understand that it's a mechanical device and that for every 100 units made, a certain percentage are going to fail. I would never wish it to happen to another kiddo, but I definitely wish it wasn't Calvin. I miss seeing him smile when turn on his implant and say ,"Good Morning Calvin!"
I don't feel like his interruption to sound has interrupted our love or our bond though. My signing has improved a lot from relying on it solely to communicate with him, and he will finally watch and pay attention when I'm trying to sign more than a few words to him. His signing has skyrocketed and he is still the same profoundly happy baby he's always been, hearing or not. For that I'm grateful.
