Tube Surgery From Hell

11111So that title might be a little extreme. But Cooper’s tube surgery was one of the worst experiences of my life. First, the days before the surgery, Cooper stopped sleeping. He stopped playing with his toys. He stopped interacting. He turned into a complete crying, whiny mess. He was a different kid. The only thing he would do was watch cartoons on PBS. I would try and get him to set up his train or read or engage him in activities that he liked and it wouldn’t work.

My husband had been hunting one weekend in July and when he got back I told him that I almost snapped. I couldn’t take the whining anymore. At one point I had finally got Cooper down for a nap and Sawyer made one peep and I yelled at him for crying. My perfect newborn. I was just so stressed though. Cooper’s demands were exhausting. It would start in the at 5 AM in the morning. Or maybe even before. Cooper has been known to wake up at 4:30. We don’t have cable and had moved our DVD player to our basement family room in hopes that Cooper would get less demanding about watching movies. Unfortunately, cartoons on PBS don’t start until 7 AM. So the mornings were long. Then we would fight to get him dressed. Then fight over breakfast. Fight to shut the cartoons off. He would carry the remote around the house. We would have to unplug the tv. And so on.

That Monday morning I called the Dr. and demanded that Cooper’s surgery be moved up. We couldn’t live like this. I think I sounded so desperate that the nurse felt bad for me. But here is the key…you have to be an advocate for your child’s health. I didn’t know that before I had kids. It didn’t occur to me. I never went to the doctor so when we started it was shocking how much I had to ask for.

When we got to the hospital for the surgery we politely explained to the nurse that Cooper was nonverbal and he was going to be VERY stressed out by all of the this. I remember her say, “is there something wrong with him?” I wanted to say, WTF does that mean? He doesn’t like the doctor. What kid does!! I was so mad.

I want to add here that at this point in Cooper’s life every situation was highly stressful. And add in a newborn. Getting Cooper in the gown was awful. Getting him to take the medicine was even worse.

I was actually relieved when they took him back for the surgery. Sawyer was sleeping in his stroller and we turned on the Today Show and drank coffee. For the next 30 minutes I relaxed. I talked to my husband. I had hope that this was going to work. I knew that the little boy that went back for surgery wasn’t feeling well and that this was going to fix him. I just knew it.

They surgery took a really long time. Longer than we thought it would. Close to 3 hours. Everyone we talked to said that a tube surgery takes less than an hour. I began to panic. Which isn’t uncommon for me. I went out to the nurses station and asked what was going on. A doctor that I hadn’t seen before said just left Cooper, he was doing fine, but she wanted to talk with us. Uh-Oh. My stomach dropped. I knew something was coming.

Dr. Alice (name changed) came in and said the following:

Dr: Hi, my name is Dr. Alice. I am an audiologist and while Cooper was sleeping I performed an ABR on him. I am sorry to tell you that Cooper has a mild to moderate hearing loss in both ears and will have to wear hearing aids the rest of his life. There are many sounds that Cooper will never hear. I apologize but I am unprepared to talk anymore about this right now.

Kate: uncontrollable sobbing. Instant flood works.

Hubs: No words.

Kate: You are unprepared to talk about this right now? When can we talk to you?

Dr: I will call you this afternoon. We will want to get Cooper fitted for hearing aids immediately.

Dr. leaves.

I swear the world stopped spinning. I know I stopped breathing. In one single instant every single thing changed. I just sat there.Hubs just sat there. We were too shocked to speak. My first thoughts were….Oh, this is why he isn’t talking. He can’t hear. But in the next 5 minutes while I waited for my sweet boy to come back I sat and thought about Cooper’s hearing. I couldn’t think of one thing that stinker couldn’t hear.

All I wanted at that moment was Cooper. I wanted to hold him and snuggle him. I needed him. I needed to grab him and run away from this place. Cooper was fine. He didn’t need hearing aids. I had to get out of there.

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7 thoughts on “Tube Surgery From Hell

  1. I’ve just come across your blog via WordPress and reading this post brought me to tears. My 7-year old has bilateral mixed hearing loss and although we were somewhat prepared for the diagnosis after years of failed hearing tests, actually hearing the audiologist speak those words after her ABR when she was 3 was utterly devastating. I’m sorry that the audiologist you met was so insensitive. I can’t tell you everything is going to be okay, but I can tell you this – 4 years into our journey with hearing aids, my daughter is in a mainstream classroom and beating everyone’s expectations of what she could achieve. Our kids are tough, and their strength is fuelled by having us, their mamas, at their back. Best of luck to Cooper, and to you xx

    • Hi. I love your comment! I am so glad to hear that about your daughter. When Cooper was first diagnosed with a hearing loss I searched everywhere for stories about kids with hearing loss. It was tough going. The diagnosis was so hard on me. I think it actually changed me a little bit. Maybe hardened me or maybe me unsure of myself. It’s hard to explain. I just knew that adding a hearing loss into the mix meant there were going to be struggles. And that was scary. Best of luck to you as well!

  2. Good luck in this journey. I hope your son excels in everything he may want to do. I am in my 30’s and just got my first hearing aids a couple weeks ago due to mild-moderate loss. I think I feel you emotions they are all over the place. Fight for your child in every
    way and he will surprise everyone!!!

  3. Pingback: The Beginning of GREAT THINGS are sometimes the hardest. | findingcoopersvoice

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