Confidence is Fragile

Well…here we are at Shriners again…and getting spoiled! We have been in Montreal since last Thursday. We were at the hospital next door for pre-op on Friday, but popped in at Shriners to work out some details. Of course they pulled us in with these wonderful people who had just made a huge toy donation to the hospital….thanks you amazing people whose name I forgot to ask! Ben selected a Battleship Game, which is perfect because we have a lot of down-time in our future. Let me update you with what has been going on…

I think the last time I posted, we were getting Benjamin’s Phase One BAHA (bone anchored hearing aid) surgery back home. He did really well and seemed to heal quite nicely. I had a few doctor concerns as only medical parents can understand….there were “day-of-surgery” changes to our operating plan, which was annoying and anxiety producing, but we made some quick decisions and moved on (strike one). However, in the days of healing post-surgery, we had some other concerns about the placement of one of his hearing aids. I met with the surgeon for follow-up. She wanted me to sign-off on Phase two, but I mentioned I had some concerns with Phase one. She asked what they were and I mentioned that I thought the left one might be too far back – I thought it could give him feedback and maybe be uncomfortable – they are usually placed at the side of the head, but this one was right at the back. She said she had wondered the same things too during surgery, but it was not good protocol to make changes to your surgical plan during surgery. I was surprised that she was thinking this and a) didn’t bring it up first, and b) didn’t come over and look at Ben’s head. She said we would have a team meeting with myself, Ben, the audiologist, the doctors who design the template and herself to see if there could be potential problems with this positioning. (Even though I feel like they were doing the right thing…I still felt like this was a strike two).

Anyways, to make a long story short, I spoke with other professionals about this. They suggested we meet with the team and also get a second opinion. In our follow-up appointment with Shriners, I mentioned this to our surgeon. He said, I know just the person.

Shriners arranged for everything, and within weeks we had a Zoom meeting with (I believe) the only doctor in Canada who specializes in both plastics AND ENT. She asked all the right questions and we sent her a ream of documentation including the initial OR report and X-rays. We felt like we were in good hands. Meanwhile: the initial BAHA team called and said they were still going to have a meeting, but didn’t want Benjamin and I to come. (To me, this was strike three). I seriously don’t know how they can evaluate this without having the patient in front of them. At this point I completely lost confidence in my team, and I had no intentions of trusting his life to them, which is what we have to do as parents.

It’s weird, but once that confidence is broken, it is very difficult to continue with a medical relationship. I am sad as this will have negative repercussions in regards to convenience, but I just feel that we need to ensure we are not doing something that will make him uncomfortable for the rest of his life….like having screws out the back of his head. How would that feel if you are sitting on a couch or gaming chair? All the cool kids have screws out the sides of their heads….call it the Frankenstein trend!

Anyways, Ben had surgery on Monday and they ended up putting in the screws for his new BAHAs as well as tweaking his ears a bit to make it easier for him to wear glasses. His surgeon called me last week to clarify our understandings and ensure there would be no surprised on the day of surgery. She also grabbed an old pair of glasses from home, sterilized them, and used these to help her position both the BAHA and glasses during surgery to ensure there were no repercussions. She assured me she always measures twice and cuts once. She allowed me to be part of the planning. She used a sharpie to plan out his surgery, and we discussed potential issues. Surgery is not just cutting humans – there is a huge communication element to it. Anyways, his surgery was quite long – lasting about 7 hours, but she had pre-warned me not to be concerned if it took a while. Overall, he seems to be doing quite well. There will be another phase of this surgery (I’m not sure when), but I don’t think it will be as intense…fingers crossed. So….let the healing begin. Currently Ben is not wearing hearing aids as we can’t find a place to put them. It is making our conversations VERY INTERESTING!!!

Sent the little mummy off to hospital school this morning!
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6 thoughts on “Confidence is Fragile

  1. My warm thoughts are with you , hoping the recovery will go as planned. Following your journey and lots of love your way. xox

  2. I am in awe of both of you, immense courage, bravery and strength. Sending HUGE HUGS to you and Ben. ❤️

  3. Wow! What a trooper!!! ( family too!!!) Hoping for great success and a speedy recovery! Thanks for the updates, Karen! I cannot imagine the stress. Sending love and prayers! Aunty Sue ❤️

  4. Aw friend. You and that little kid are the strongest people I know. Thinking about you guys. ❤️❤️

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