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.

A ray of Sunshine in all the Red Tape

Dealing with middle people, when all I want to do is talk to the person in charge has been a challenge for me. I've learned that in the medical field, getting to talk to the person you want to, can come with a lot of red tape. I hate red tape, but luckily I'm really stubborn and I was also about to find an ally and resource just when I needed one. 

Dr. W told us that his report would be sent to our pediatrician either that day or the next at the latest, and they should call us to help schedule an appointment with Primary Children's Hospital to get the ball rolling on a sedated ABR test.

The next day while I was waiting for our doctors office to call, I had remembered that a friend from High School had mentioned something about getting her daughter to wear hearing aids in a Facebook post. I went online, but it had been awhile and I couldn't find the post on her page anymore, but I decided to message her to see if it was in fact her that had posted it.

I felt a little awkward, since a)I wasn't sure it was actually her who had posted it and b)I didn't want to offend her by asking something insensitive on accident. I typed out a message "So this is a little random, but I vaguely remember you mentioning that your little girl had hearing aids. If so, I have a few questions if you wouldn't mind. We just found out my 2 year old, who passed the initial OAE test as a baby, has since become deaf and we're running all sorts of tests and things, but anyway... if it wasn't you, sorry for the randomness of this."

A minute or two later she messaged back, "Yes! Text me!" and gave me her number. So for the next half hour or so I sent messages about what was going on and asked her what process they went through to get answers. I told her they wanted to do a sedated ABR and that we were going to Primary Children's for the test.

She let me know that they had gone up for tests several times, and which branch of the hospital they liked the most and why, and also recommended that while we were doing the ABR sedated we should really try and get an MRI done at the same time to save ourselves a trip and a second sedation. She was sooo gracious and helpful and I was so glad for the advice and support. I still am, because in the long run, her advice saved us a lot of time getting to our final diagnosis. So, if you're reading this,  THANK YOU Ashly! I doubt I'll ever be able to repay you!So two days went past since our visit with Dr. W and I hadn't heard from our Dr. P's office. So, being the person that I am, I called. I wasn't sure who to talk to, so I listened to all of the "new options carefully" as instructed. I decided to just talk to a receptionist and let them help me decide where I needed to be directed.

I explained we had a report forwarded to them, and that we were waiting to hear from them about a referral. They put me on hold, then said, "You're going to want to talk to Dr. P's medical assistant, I'll transfer you."

She didn't answer, but her message said to leave details and she would get back to us with in 24 hours. It was a Thursday morning. I asked her if she'd gotten the report and let her know we were also seeking to get an MRI done at the same time on the recommendation of a friend who had gone through a similar situation and could she please ask Dr. P to put that in the referral. So my message left I figured I'd hear back by the next morning.

I didn't. So, I called again, got a different receptionist, who told me that she pulled up Tiny's chart and there wasn't anything sent over for her in the last week. WHAT?!

"Okay, I'll call and make sure they sent it over, let me make sure I have the right fax number."

So I hang up, call Dr. W's office and talk to his receptionist. "No, I sent that over Tuesday as soon as Dr. W was done with it, he wanted to make sure we got it done quickly."

"Alright, would you mind sending it again, this is the fax number they gave me..."

"No problem. Let me know if they don't get it again and we can make other arrangements."

Hang up. Wait 20 minutes, just to be on the safe side, call back Dr. P's office. They didn't think they got it, and then someone had the bright idea to actually go and check the fax machine. "Alright, it looks like we've already sent things along. It's to Primary Children's, is that right?"

"Yes."

"Okay, let me get you the number to call and so you can get that scheduled."

"Oh, you don't do the scheduling?"

"No, it's easier if you just do it for yourself, that way you know for sure what's good for your schedule."

Okay. So I wrote the number down and thought, wow, that was easy. I should have knocked on wood.

I called them up, only to get a fax line number screech tone. Not feeling like calling Dr. P's office again for a 3rd time that day, I looked the number up online. Turns out, the referral wasn't actually sent yet and we couldn't send anything up until it was.

So, I do call Dr. P's office for a third time to explain what I was told to another receptionist, or the same one, there are about six in the office for all the doctors. The one I talked to told me this- "Yeah, it looks like Dr. P hasn't seen it yet, so I'll get this back to his medical assistant so she can review it and make her recommendation to Dr. P."

Come again? I needed a Medical Assistant to review the test results, to decide if our doctor would even SEE said test results, before he could even decide if he was going to give us the referral we needed? I grit my teeth, forced myself to take a deep breath, "How long does that usually take?"

"Well, hopefully she'll be able to look over it this afternoon and then Dr. P does all his reviews and referrals in the mornings so you should hear something Monday, Tuesday at the latest with the weekend coming up. I'll transfer you to her voice mail so you can leave a message and let her know exactly what you need."

"Alright. Thanks for your help." I tried to mean it, and left my message about the test and wanting and MRI to go along with it.

I waited until almost noon on Tuesday before I called, again. By now I knew I just needed to talk to the medical assistant to our pediatrician, I had become very familiar with the buttons I needed to push to get to the menu selection I wanted. I pushed, it rang and rang and for a brief moment I thought I might actually get the MA. Nope. Machine.

I leave another message with all the information again, and again asking her if she will see if we can get an MRI referral as well.

The rest of the week goes by without hearing anything, so I call and a receptionist lets me know that the paperwork is in Dr. P's box and then transfers me so I can leave yet another message on Friday and wait through the weekend.

Monday afternoon I am medium simmer/low boil level of irritation. I need answers and all I'm getting is waiting and red tape! I call and decide on a receptionist. I explain what's going on and she lets me know the MA had been sick and out of the office part of last week, so she's slowly getting through all of her messages and she would make a note that she call me first thing the next morning.

Yeah. Right.

Tuesday afternoon, I am a ragging inferno of irritation. Who is this MA and what in the crap is she doing? I called, again, and mashed the button to send me straight to the receptionist. "I'm sorry, she's already left for the day, can I take a message?" I thought my ears were deceiving me.

"I've already left her two messages and it's been nearly two weeks since this was sent over. Do I need to just come in tomorrow so I can talk to someone??"

"Hold on just a minute, let me see what I can do."

I wait for a minute or so, and guess who comes on the line? The medical assistant. Did they forward my call to a cell phone? No. I can hear the background noise of the office. So, either she didn't want to talk to me or someone lied when they said she was gone for the day. Grrrr. Hold. It. Together.

"Hi, this is Miss Medical Assistant. So, I just pulled this from my box and I'm looking at this test and recommendation from the audiologist and you are wanting a referral for a sedated test, is that right?" She sounded irritated and rude.

She just now was looking at it? What was going on? Had she listened to ANY of my messages??? I am seriously about to loose my stuffing at this point, but I still hold it in.

"Yes. I'm also wanting to know if we can get an MRI at the same time so we won't have to sedate her more than once or take more than one trip."

"I heard that in your message but I don't see any notes here about a need for an MRI." All of this I had explained in all of my messages.

"No, there isn't a doctor recommendation for this, but I have a friend who went through a similar situation with her daughter and she told me if the results of the ABR weren't good, or weren't conclusive, they'd want to do an MRI. We'd really prefer to sedate her only once if we can help it. I don't even mind if it has a patient requested note, but we'd really like an MRI added to the referral."

"I can talk to Dr. P and see what he thinks, but I'm not sure why you want it. Explain to me why you think you are going to need it?"

Did I not just do that? So I decided to go more in depth of things we'd noticed and talked about with Dr. W. We'd mentioned at one point at around the time she stopped really progressing that Tiny had taken a spill off of my mom's back steps and hit her head pretty hard on the corner of a piece of petrified wood. Dr. W told us that if it had been bad enough to cause hearing loss she would have been in the hospital, but she had barely cried, she hadn't thrown up, or gone limp or any of the signs of a major head injury, so it was unlikely, but still a very slim possibility. "And because I want it to make sure there isn't anything else going on, any underlying factors."

I explained all this to Miss MA, along with my reasons again for not wanting to travel up twice or sedate her twice if we could help it. "Alright, well, I just needed to know everything before I talk to Dr. P about all this in the morning. I'll call you tomorrow and let you know what he says."

I thought, "Yeah, I won't hold my breath."

But, she did call the next day, at the very end of the day. Dr. P was totally cool with referring us for both things and she directed me back to the receptionists to make sure everything got squared away with sending up the referral to the right branch of the hospital.

FINALLY! I had already made sure I had the right fax and phone numbers for the branch of the hospital we wanted to go to and gave them to the receptionist.

I called and set up the appointments the very next morning. They were pretty busy, but they had an opening  in three weeks when we were already planning on being up north for another event, so we took it.

Observations:
I wish I could say that this is the only time we've had a bad experience with our Doctor's office.  I've been asked why we don't just find a new doctor? My answer-  Honestly right now, I don't have the energy or desire to re-explain every detail and every appointment we've had, and every test we've had run, and I like the actual doctor- even if his staff leaves a lot to be desired. When we're done with all that's coming in the next months, there is a strong possibility we will be finding a new office and doctor so we won't have to go through all that we did. If I had it all to do over again, I think I would seriously consider finding a new pediatrician right after that first message wasn't returned. I also think I should have taken the time to just go in to the office and make someone talk to me face to face that first week. I think it would have helped, but I was afraid I would loose it. I'm better at controlling my tone and frustration when  I'm on the phone instead of watching someone roll their eyes or make fake empathetic faces, when they are anything but.

I don't regret harassing the medical assistant, maybe I should, but I don't. I actually wish I would have reported her to her superior or even our pediatrician. It shouldn't have been 2 weeks before I got her on the phone. I should not have had to leave 3 messages and harass countless receptionists trying to cover for her, before one of them made her get on the phone with me. I should not have been treated like a nuisance when she actually did talk to me. She needed to be doing her job, and she wasn't. I don't regret forcing her to do that job. I advocated for my child, and for what I felt was best for her, and just because the MA's opinion might have been different, our pediatrician's was the same as mine and he gave me what I asked for.

I'll always be grateful that I talked with a friend who had gone through it and had an idea of what we needed to do. If you don't have someone in your life, there are still resources and people who can help you, they are just a google away. =]

You have the right to ask for extra tests, they have the right to say no. If they do, there are always more options. I don't regret being stubborn and a thorn in their side, and I never will.