The Sedated Tests - Finally Knowing

"Hope for the best and prepare for the worst" has been something that has been a part of my life since finding out my husband might get deployed, while we were still dating(we got married and he was gone two weeks after that).

It's what I kept telling myself as the day for Tiny's sedated appointments got closer and closer. I also kept telling myself that even if she was deaf, it wasn't life threatening like what other parents face with kids with cancer or incurable diseases. Deafness was not a death sentence, it would just be hard.

We left the afternoon before to go and stay with my husband's Sister who lived 45mins from the hospital instead of 4 hours. We ate dinner early and played games and watched a movie and got the girls to bed pretty early to keep Tiny's mind off of the fact that she couldn't have anything more to eat until it was all over with.

Needless to say, it was not the best nights sleep for me, and I stayed awake watching a movie and reading a book later than everyone else. I just couldn't shut my mind off until I was exhausted.

We got up the next morning and made sure to have Tiny drink juice and water until the time she wasn't allowed. We spent time with Bug letting her know what was going on and asking her to be really good for her Aunt while we were gone. We also double checked our driving directions to get to the branch of the hospital we had set our appointment up for, then we headed out.

The drive went fast, Tiny was good and we got to the hospital to check in early and fill out all the insurance forms and make sure everything was in order.

They couldn't find our appointment, but gave us papers to fill out while they figured things out. Then we had the front desk lady come and tell us that our appointment for the sedated tests had been mistakenly scheduled to take place up at the main branch of the hospital not where we were. There was no way we would make the appointment time as the main branch was 30 minutes away with no traffic, which there always was.

She told us they could do the MRI, but they didn't think we could do the ABR test, which was the important one. She told us we could just "go home and come back tomorrow" or "do the MRI and reschedule the ABR for another day" if we wanted. Grrrrrrrr. We explained that we lived 4 hours away and that the whole point had been to sedate our daughter only once.

She told us to sit tight and they would see what they could do. I was so irritated. I had double made sure that I had the right phone number for the right branch of the hospital. Throughout the phone conversation of scheduling I had repeatedly asked if they were making sure they were setting it up for this branch and had been assured that they were. I even asked when they called two days before to get us pre-sedation guidelines on food and drink.

My husband and I debated on our options if they couldn't make both appointments work. I really felt strongly about only sedating her once if we could, mostly because her sister had been sedated for dental work before and it always freaked me out to watch her disappear into herself while sedated.

A nurse came out and talked to us and started some prep work so that we could get going as soon as we heard and were able to decide what we were going to do. So we played with the toys and watched the movie on the TV in the play area and silently prayed.

After being there for about a half hour and someone came out from the Audiology department and let us know that they were able to get in touch with the head audiologist for their main hospital and she happened to be close by for a meeting and we could get started and she would be able to come after her meeting while Tiny was still sedated and run the tests.

The nurse came back out and took us back to get the IV started. She explained what was going on and that the MRI would take about an hour after they got her to sleep. It could be longer since the images were being updated to the tech and a doctor, who could then order different angles and scans for clarity, all while it was going on. Tiny was not happy about the IV in her arm and even after getting hooked up to the medication she fought and fought to stay awake. We were waiting outside of the MRI room with her and just kept having to wait for her to stop rousing.

After she finally went under they wheeled her in they told us we could go get something to eat, or go do errands if we had them, or we could wait in the recovery room. I wondered what parent would leave the hospital, but decided that I shouldn't judge anyone if they needed the option. Josh and I hadn't eaten, but neither of us were hungry, so they took us into the recovery room and handed us a TV remote to use if we wanted.

We called Josh's sister and let her know we were going to be longer than expected and she was great and let us know it was no problem. I remember trying to watch TV but turned it off, I played one of the kids games on the tablet we had for them for awhile, but I couldn't really concentrate. I could tell Josh was doing the same, trying to distract himself a bit unsuccessfully.

The audiologist showed up, and told us to call her Sherry. She asked a lot of in depth questions, some we had answered before, others we hadn't about family history. I voiced my concerns about Tiny hitting her head as part of the reason we wanted the MRI and she told us what Dr. W had, that if it had been bad enough to cause hearing loss, we would have known sooner.

Sherry asked us if we'd looked into cochlear implants. "Josh has, but I had to stop. I didn't want to freak myself out before I knew anything for sure." She nodded. "That's good. Most of the videos out there are the exception, not the norm for initial activation anyway, and there is a lot of stuff that can be scary out there we don't know you need to worry about yet. She may be just fine with hearing aids, but those can be a challenge too."

I was really glad she talked to us in a very real way. She didn't try to scare us, but did tell us about some of the scary things we could be looking at. She also told us that if there wasn't a clear reason for the hearing loss, it would really be up to us "how far down the rabbit hole" we wanted to go to find a reason for it all. She let us know that sometimes even after all the tests they can do, there is no rhyme or reason for some hearing loss. I was glad she didn't try to sugar coat it, but was also kind in the way she spoke to us.

She left to go get her machine and things ready to bring in and we waited some more. The MRI took around an hour and 40 minutes. I know because I couldn't stop looking at the clock after the hour mark.

They wheeled Tiny into the recovery, but she stayed hooked up to the sedation to keep her under enough for the ABR, but slowly be weened off so she could wake up. We pulled up chairs on the opposite side of Sherry, and again, tried to stay distracted. I tried my book for awhile and then games on the tablet again. I kept watching Sherry's screens as she put information in, took notes, moved probes in Tiny's ears. Repeat.

She pulled the probes from Tiny's ears and coiled things up and pushed the machine back. I felt the news before she even opened her mouth. My eyes knew and I bit my lip to keep from crying. She came around the bed and sat on the end in front of us. "There is no easy way to say this, your daughter has no measurable hearing. I'm so sorry."

I nodded, speechless at first, and tried not to cry to no avail. I know I shut down a bit, even as I tried to stay focused. "At least now we know and we have a direction to go in," I said. Josh nodded. Our nice nurse brought a tissue box over as Sherry handed us a blue folder full of information for parents or children with hearing loss. I remember her telling us that she had rerun the OAE and fluid tests as well as the ABR. She told us she wanted to refer us to an ENT that specialized in child and infant hearing loss. She talked about some of the services we'd find in the packet and asked us if she could share our information with a few organizations that would reach out to us and give us support and information.

We asked a few questions and she commended us for how we were taking the news. "Hope for the best, prepare for the worst," came to mind. You can't really prepare for bad news, but mentally it had helped me be ready a bit. I had also decided it was better to know and have a direction to go, a way to help our daughter, and our family. To have something to do or research or get help for, was a small relief, despite the news.

"Now you can go and read all the scary stuff about implants, but again, I'd caution you against watching videos. A lot of them are sponsored by companies and the happy reactions and amazing results with initial turn on are the exception, not the rule. Successful implants take a lot of work and appointments but are shown to be really effective if done soon enough. My card is in that packet. If you have any questions or concerns, please do not hesitate to call me."

We asked her to please forward Tiny's results to Dr. W and Dr. P and then she left and the nurse unhooked Tiny's IV.  I tried to pull it together and stop crying while we tried to wake her up and get her to eat a popsicle and drink some juice and things before we could go.

I tried not to let my thoughts spiral out of control over all the things to come as we roused her. "It is not a death sentence." I tried to remind myself. There were much worse things a parent could face, much worse news that could be delivered. But this was my bad news, this was my  child and I couldn't help but feel a loss. To grieve, and to wonder, to place the blame for all of this squarely on my shoulders.

We were given more information and the nurses contact information to call, just in case she showed any adverse reactions to the sedation after the fact and then we headed out to the car. I held it together until we reached the car.

I'd driven up, but as I reached for the door, I started to loose it again. Josh kindly offered to drive and we all got buckled in and headed back to his sisters house. We both put ear pieces in and called our parents and told them the news.

It was certain now. Tiny could not hear us, not even a little from what the tests showed. My child is deaf.

I repeated the the following sentences a lot in the weeks that followed, "No, she has no measurable hearing. Yes there are options. No, we don't know what caused it yet. No we don't know if it can be reversed. Yes, we are exploring all of our options." It was hard to say, but it also made it real.

Then... the opinions came flooding in.

Observations: Double, triple, quadruple check your appointments, especially if you're traveling for them. Don't worry about being a pain, it's your child and all of the hassle in the world is worth it to help them.

I also learned, that even though Tiny's results were not life threatening, or dire, or "as bad as so-and-so or such-and-such" they were paradigm shifting for us. It was and is okay to be upset about the new struggles and trials, and to mourn her loss of hearing. No parent ever wants their child to have to face hardships, or to receive bad news. It's okay to be sad and upset in your situation. It's okay to cry. I still did reliving and thinking about and writing all of this.

I was also glad I hadn't told myself that everything was going to turn out how we wanted. I hoped, but I also prepared mentally for the bad news and that helped me to focus on what I could do with whatever our news was. It's an old saying, but for me, attitude was everything, even if I still have to remind myself often.