They're great, but some are more personable than others.
So about a little over a month after the ABR and MRI we had our appointment with the specialist Sherry had
recommended- an ENT who specialized in Infant and Child hearing loss. While we were waiting for the appointment I had been informed about two causes of hearing loss that could likely be Tiny's problem. One was LVA/EVA, or large vestibular aqueducts- it's a malformation of the inner ear and can cause hearing problems and balance issues. There isn't really treatment for this. We had also been informed for the first time about CMV, or Cytomegalovirus- which can cause hearing loss, vision loss, and cognitive disabilities, BUT if caught can be treated by antivirals.
We got to the doctors office, filled out the ever flowing paper work, and waited in a busy waiting room with a ton of other kids and watched Tiny have a pretty good time coloring across the table with a little boy.
We did the tell the story/history to the nurse as she typed into a computer and nodded at us and then sat and waited for the doctor. He came in, looked over the notes, quickly introduced himself and then pulled up Tiny's MRI he had looked over along with her medical files, and the notes Sherry had given him and basically told us it didn't look
like anything he could help with in his specialty.
We asked about LVA, which he quickly pointed to some blobs on the MRI and said they looked normal. He did however have some suspicions about CMV and had a us do a blood and urine test on her. We didn't have a "blood spot card" which seemed to really irritated him, and he sent us down to the blood draw room and that was the last time we saw him.
That was a chore in and of it's self. We were able to draw her blood with some tears but nothing to traumatic, but getting a urine sample was difficult as Tiny had apparently just gone as we headed that way and she didn't like the little bag they stuck on her, so we had to sit around and we fed her and kept trying to get her to drink juice and water and eat popcicles and all she wanted to do was have a nap. It wasn't great having the nurses come in our room every 15 mins to see if she'd gone yet, like we were taking up precious space they needed even though there were four other open rooms they were rotating through.
When Tiny finally did go, it wasn't much but they told us they'd "make due." Seriously ladies, if there was a magic wand I could wave to make my kid pee when I wanted, I would have waved it and not sat around for almost 2 hours forcing juice and crackers on her.
We did leave with results- Tiny did have CMV- and we were given another referral to another specialist to really determine if the cause of the loss was CMV, because she could have gotten it at any point and couldn't be for sure it was what had caused it all, or was still causing problems. If CMV is caught soon enough it can be stopped and to an extent reversed so we were very motivated to find out.
Over all, I was glad for a chance to get more information but the way we were rushed and treated this time, left a little bit of a sour taste in my mouth.
After a minor mix up with the referral- we were told that doctor didn't take new patients or kids when we called the first time- we called the 1st specialist and they explained that we had to tell them up front we had a referral for CMV specific. We did and were told that it would be at least 2 months until the next appointment time. We took and asked to be put on the waiting list.
A few weeks later we got a call that there was an opening in about 2 weeks and would we be interested. The answer was YES even though the Husband was going to be gone for work training.
I traveled back up with my kids, again staying with my gracious sister-in-law, who again watched Bug while I went with just Tiny to another doctors office. We checked in, and again played in a busy waiting area with a bunch of other kids.
When we were taken back, it was a resident who took her medical history. She interacted with us, and asked a lot of in depth questions to fill out the history they already had in their system from past visits to affiliated offices/hospitals.
We did wait awhile after she left before Dr. B came in to talk to us, but he brought toys and was very good with Tiny as he checked her out. He did some motion tests with her and asked how her balance was and watched her walk and run and felt the bones of her head and arms and legs. After his exam he pulled up Tiny's MRI and showed me specifically why he thought she had CMV related hearing loss.
The brain gets extra pockets of white matter while CMV runs it's course and Tiny had all the right pockets in all the right places. Since we didn't have a blood spot card, he wouldn't say with 100% certainty that she had contracted it gestationally, but he did tell me if he was to make a diagnosis he'd say with 97% certainty that gestational CMV was the culprit.
He gently let me know that Antivirals wouldn't do any good in our case since she was already 2 1/2 by now and antivirals only showed success in some cases, he estimated between 60-80%, if it was caught early and treated before 18 months. I had prepared myself for that answer, even if I hoped it would be an option.
But Dr. B was actually really great. He's a lead researcher of CMV and so he had a lot of knowledge to share and answers to questions. Once he was in with Tiny and myself he spent a good hour or more going over everything, asking if I had any questions, and then waiting while I tried to think of any, and answering ones I did. He told me that Tiny missed a window in Utah legislation that had now made it mandatory for doctors to do follow up OAE's on kids at 3 months and 6 months. He'd helped the woman in the House of Representatives with her legislation after her granddaughter had lost her hearing to CMV. He was kind and didn't rush me, was gentle and friendly with Tiny and in the end he gave me a business card with an extra phone number to get in touch with him that he wrote down.
Since the Husband couldn't be there, he said to please call and ask any more questions he might have and he'd do his best to answer them.
He gave me a lot of information about CMV and I plan to write
another post about it and what I've learned and link some articles for
anyone wanting to read more.
I know they can't all take the time Dr. B did, but I was glad that when it came down to finally getting and knowing a cause, I got him through the grapevine of referrals. You can't always pick who you get, but hopefully you can at least get the answers you need.
Observations:
Even not great experiences can yield another step in the right direction. I'm glad for that perspective now, but at the time I felt like we were going through the grinder with some of the people "pushing us through."
I can look back now and realize that even if it was irritating to be rushed through at times, it made the times that were important and the time taken more relieving- even if the news wasn't great.
I also had learned from past phone/office assistants/referrals that I wasn't afraid to call back an office and say "Hey, they say they don't take patients now, did my referral get mixed up or did I call the wrong number?" A phone call to fix a mix up is an easy thing to do to keep on the trail of answers.
Tuesday, March 1, 2016
A note on Unscolicited Advice/Opinions/etc
Once we had Tiny's diagnosis of "Profound Hearing Loss" it seemed everyone I talked to had been holding back their expert advice and opinions.
Part of me was glad that people we knew were interested in what was going on with my daughter. They wanted to know how she was doing, what we'd found out, what we were going to be doing. What had caused it, most often.
The conversation I'd basically memorized from telling our close family started to happen everywhere- at the park, at the store, at church, on Facebook as friends and acquaintances found out and asked.
My mouth wore out from the telling and retelling- which is saying something from a big mouth talker like myself.
Most of the time I didn't mind. Most of the time people realized there was this tender line they shouldn't cross with their words, because really, the specifics were none of their business.
Then there were "those people." The ones that turned me into a delicately veiled boiling rage monster with things they said.
First type of person- the quiet accuser
I get it. This is an odd situation. There isn't a history of deafness in our family, she'd had 2 ear infections, but those had cleared up easily with medication. But the dirty little thing that would come out in some conversations was a subtle accusation.
Had I or her father, her parents, caused this? Or in other words- had we abused our kid.
We play rough with our kids. Their Dad adores them, but he also quietly hoped to have sons, but when he got daughters he decided they were and are just as great and that they can be tough and love the things he loves as well. So we play rough. I stressed for a long time thinking over every bump and scuff and bruise I could remember. I remembered Tiny taking a dive off the couch into the bar of an exercise trampoline, the time her sister accidentally ran her down with her bike and she fell on the cement a little harder than a normal toddler tumble.
When we found out about her hearing loss I panicked and did a bunch of googling about hearing loss from injury. Even after we knew from the MRI that injury was not the reason in Tiny's case I was still convinced it was something I had done.
I admit this now, because I feel it was an important thing for me to come to terms with. I could have hurt my child in those instances. Those things could have been the reason she lost her hearing. To this day I play things over and over in my mind, even knowing what I know now.
Head injury can cause hearing loss. Period. Did we purposely harm our child? No. But the way people talk can make you feel like you have. With one person I had to finally say, "As far as they can tell from her MRI she has no brain damage of any sort," to finally get the look of suspicion from their face.
If you have real concerns, if you've witnessed a child being abused, please report it, but if you're just digging, stop it. Please don't be this person unless you have a genuine reason to be. I agonized enough on my own that I was the problem, that I was the cause, that something I hadn't noticed or some rough play we'd had had hurt her. I promise you, I felt guilty enough for things that I hadn't even done.
Second type of person- the Doctor that isn't a doctor
Before we found out what caused Tiny's hearing loss, we had lots of people tell us things we already ruled out. These people usually have good intentions, I think. Conversations usually went something like this-
"Are you sure she just doesn't need tubes? Are they sure it isn't fluid? I had a friend who's kid was having speech problems and they found out he couldn't hear because of fluid."
Yup, pretty sure the three actual doctors we've seen have ruled out fluid, but please, why don't YOU look in my kids ears and tell me if that's the problem.
Or
"Have they checked the shape of her ear canal? If it's shaped wrong that can cause problems and they have surgery for that now you know."
Yeah, the ENT told us this wasn't our problem after looking at scans of my kids skull and BRAIN and showing them too me... which is a weird experience watching your kids face peal away through black and white MRI images.
Or
"I bet it's something they can give you some medicine for, most likely an antibiotic will clear it all up."
Don't I wish.
I figure they were trying to reassure me, but most of the time it felt patronizing, like I hadn't already asked those things.
Third type of person- The one's who should think more carefully before speaking
These people can have the best intention in the world, and I still can't stop the feeling of my chest tightening up when I think about these conversations.
Because this is how it basically goes, somewhere near the end of the conversation-
"Well, this is tough, but there are lots of technologies out there now. So when do you think you'll have the surgery to fix her. You know with those hearing aid things that go in their head? "
UGH! and TRIPLE QUADRUPLE UGGGGH!
First of all- my child isn't broken, so therefore doesn't need to be fixed. I reeeeally had to bite my tongue on this one. And it happened more than once.
Second- Please, if you don't know what "that thing" is called, you probably shouldn't be talking about it, to anyone, but especially not with a slightly traumatized parent who's brain is not in the best of places.
Third- that is a very big and very personal decision. If we don't talk on a regular basis, if the only time we see each other is in passing at the grocery store, or the library, or the park, please just stick with "Hope things work out." Or even just ask about how she's doing and what's been working.
Forth and final person- The overly opinionated almost stranger
I learned really quickly that people are very opinionated about what we should or should not do with Tiny now that we knew she was deaf.
If these people had any kind of experience with a deaf, hard of hearing, or implanted person, they let me know just what they thought we should do, and sometimes in very harsh ways.
I got everything from "God made her this way so you should let her be this way" to "I can't believe you wouldn't consider implants in today's world" to "Cochlear implants are awful and dangerous. Don't do it. She doesn't need them."
I plan to write about our decision making process in another post, but I will briefly say this- You have a right to an opinion but what you don't have a right to do is tell someone what to do for their child or their family. Share an article, share a personal experience with/about someone who is deaf, hard of hearing, or implanted, but even if you're family or a really close friend- refrain from absolutes and make sure that whomever you are talking to knows, that while you might make a different choice than them, you will support the decision they feel is best.
It was very difficult to hold it together a lot of the time. Okay. Most of the time. It was hard to have these conversations in grocery isles and between book shelves at the library. Sometimes I wish someone would have said "Hey, I'd love to hear more, can we go out to get a drink or have our kids play?"
Even if things weren't "normal" anymore, sometimes I just needed to feel like it was because, life at this point was traumatic enough.
Observations:
I generally just nodded my head and said things like "I'll have to look into that." or "The doctor ruled that out," or "We aren't sure if she'll be eligible for cochlear implants" and then I'd go and vent to my husband and pull out the chocolate or ice cream.
Location can really be everything as they say. If I'm with my kids in the grocery store and they are pulling things off of shelves, it might not be a good place to try and see what's up. Public places aren't all bad, but it's best if there is an element of distraction for my kids if they're with me and you want to talk. Even if my kids aren't with me, answering personal questions in the isle of grocery store wasn't the greatest thing.
The best thing I can say about these conversations is this- I've learned myself to do my best to not ask insensitive questions. Am I perfect? No, certainly not. Do I try? For sure.
I know people in general just have no idea what to say to someone going through something they've never experienced, but there are things that you can say regardless- "I'm sorry you're going through a hard time." "I don't know what this is like, but if you just need someone to talk to or cry to, I'm willing to just listen and be here for you." "I'll be praying for/thinking of you and wishing you well."
No, you can't fix this situation, or those like it/harder than it, for someone but you can certainly be there for them.
Part of me was glad that people we knew were interested in what was going on with my daughter. They wanted to know how she was doing, what we'd found out, what we were going to be doing. What had caused it, most often.
The conversation I'd basically memorized from telling our close family started to happen everywhere- at the park, at the store, at church, on Facebook as friends and acquaintances found out and asked.
My mouth wore out from the telling and retelling- which is saying something from a big mouth talker like myself.
Most of the time I didn't mind. Most of the time people realized there was this tender line they shouldn't cross with their words, because really, the specifics were none of their business.
Then there were "those people." The ones that turned me into a delicately veiled boiling rage monster with things they said.
First type of person- the quiet accuser
I get it. This is an odd situation. There isn't a history of deafness in our family, she'd had 2 ear infections, but those had cleared up easily with medication. But the dirty little thing that would come out in some conversations was a subtle accusation.
Had I or her father, her parents, caused this? Or in other words- had we abused our kid.
We play rough with our kids. Their Dad adores them, but he also quietly hoped to have sons, but when he got daughters he decided they were and are just as great and that they can be tough and love the things he loves as well. So we play rough. I stressed for a long time thinking over every bump and scuff and bruise I could remember. I remembered Tiny taking a dive off the couch into the bar of an exercise trampoline, the time her sister accidentally ran her down with her bike and she fell on the cement a little harder than a normal toddler tumble.
When we found out about her hearing loss I panicked and did a bunch of googling about hearing loss from injury. Even after we knew from the MRI that injury was not the reason in Tiny's case I was still convinced it was something I had done.
I admit this now, because I feel it was an important thing for me to come to terms with. I could have hurt my child in those instances. Those things could have been the reason she lost her hearing. To this day I play things over and over in my mind, even knowing what I know now.
Head injury can cause hearing loss. Period. Did we purposely harm our child? No. But the way people talk can make you feel like you have. With one person I had to finally say, "As far as they can tell from her MRI she has no brain damage of any sort," to finally get the look of suspicion from their face.
If you have real concerns, if you've witnessed a child being abused, please report it, but if you're just digging, stop it. Please don't be this person unless you have a genuine reason to be. I agonized enough on my own that I was the problem, that I was the cause, that something I hadn't noticed or some rough play we'd had had hurt her. I promise you, I felt guilty enough for things that I hadn't even done.
Second type of person- the Doctor that isn't a doctor
Before we found out what caused Tiny's hearing loss, we had lots of people tell us things we already ruled out. These people usually have good intentions, I think. Conversations usually went something like this-
"Are you sure she just doesn't need tubes? Are they sure it isn't fluid? I had a friend who's kid was having speech problems and they found out he couldn't hear because of fluid."
Yup, pretty sure the three actual doctors we've seen have ruled out fluid, but please, why don't YOU look in my kids ears and tell me if that's the problem.
Or
"Have they checked the shape of her ear canal? If it's shaped wrong that can cause problems and they have surgery for that now you know."
Yeah, the ENT told us this wasn't our problem after looking at scans of my kids skull and BRAIN and showing them too me... which is a weird experience watching your kids face peal away through black and white MRI images.
Or
"I bet it's something they can give you some medicine for, most likely an antibiotic will clear it all up."
Don't I wish.
I figure they were trying to reassure me, but most of the time it felt patronizing, like I hadn't already asked those things.
Third type of person- The one's who should think more carefully before speaking
These people can have the best intention in the world, and I still can't stop the feeling of my chest tightening up when I think about these conversations.
Because this is how it basically goes, somewhere near the end of the conversation-
"Well, this is tough, but there are lots of technologies out there now. So when do you think you'll have the surgery to fix her. You know with those hearing aid things that go in their head? "
UGH! and TRIPLE QUADRUPLE UGGGGH!
First of all- my child isn't broken, so therefore doesn't need to be fixed. I reeeeally had to bite my tongue on this one. And it happened more than once.
Second- Please, if you don't know what "that thing" is called, you probably shouldn't be talking about it, to anyone, but especially not with a slightly traumatized parent who's brain is not in the best of places.
Third- that is a very big and very personal decision. If we don't talk on a regular basis, if the only time we see each other is in passing at the grocery store, or the library, or the park, please just stick with "Hope things work out." Or even just ask about how she's doing and what's been working.
Forth and final person- The overly opinionated almost stranger
I learned really quickly that people are very opinionated about what we should or should not do with Tiny now that we knew she was deaf.
If these people had any kind of experience with a deaf, hard of hearing, or implanted person, they let me know just what they thought we should do, and sometimes in very harsh ways.
I got everything from "God made her this way so you should let her be this way" to "I can't believe you wouldn't consider implants in today's world" to "Cochlear implants are awful and dangerous. Don't do it. She doesn't need them."
I plan to write about our decision making process in another post, but I will briefly say this- You have a right to an opinion but what you don't have a right to do is tell someone what to do for their child or their family. Share an article, share a personal experience with/about someone who is deaf, hard of hearing, or implanted, but even if you're family or a really close friend- refrain from absolutes and make sure that whomever you are talking to knows, that while you might make a different choice than them, you will support the decision they feel is best.
It was very difficult to hold it together a lot of the time. Okay. Most of the time. It was hard to have these conversations in grocery isles and between book shelves at the library. Sometimes I wish someone would have said "Hey, I'd love to hear more, can we go out to get a drink or have our kids play?"
Even if things weren't "normal" anymore, sometimes I just needed to feel like it was because, life at this point was traumatic enough.
Observations:
I generally just nodded my head and said things like "I'll have to look into that." or "The doctor ruled that out," or "We aren't sure if she'll be eligible for cochlear implants" and then I'd go and vent to my husband and pull out the chocolate or ice cream.
Location can really be everything as they say. If I'm with my kids in the grocery store and they are pulling things off of shelves, it might not be a good place to try and see what's up. Public places aren't all bad, but it's best if there is an element of distraction for my kids if they're with me and you want to talk. Even if my kids aren't with me, answering personal questions in the isle of grocery store wasn't the greatest thing.
The best thing I can say about these conversations is this- I've learned myself to do my best to not ask insensitive questions. Am I perfect? No, certainly not. Do I try? For sure.
I know people in general just have no idea what to say to someone going through something they've never experienced, but there are things that you can say regardless- "I'm sorry you're going through a hard time." "I don't know what this is like, but if you just need someone to talk to or cry to, I'm willing to just listen and be here for you." "I'll be praying for/thinking of you and wishing you well."
No, you can't fix this situation, or those like it/harder than it, for someone but you can certainly be there for them.
Monday, February 16, 2015
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.
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.
Thursday, February 5, 2015
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.
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.
Thursday, January 29, 2015
Audiologist- Visit #2
The two-is weeks between visits didn't feel as long as the first time, but it still wasn't easy picking up even more indications and trying not to get our hopes up for this next round of tests. Or adding more to the growing tally of questions and worries. Had I played music to loud in the car- her car seat was by a door with a speaker. Could the fluid test have been wrong? Could we still just need tubes? Was it a problem with her brain?
It was more of a relief this time to be going in. The Hubs and I were sure we were going to come out with clear answers we could act on to help Tiny.
I am not ashamed to admit that the day before her appointment we tried to run her ragged, kept her up past her bedtime, and woke her up early the next day and kept her going and going and going until it was time to get in the car for the appointment. Bug came this time, because as it turns out, she was very worried for her little sister and even though she had fun with cousins the last time, she was very upset that we didn't take her.
She told us she wanted to be there for her little sister so she wasn't scared. She is very smart and attentive for her age and she had heard us talking about everything and had started to form her own worries. She also knew Doctor visits could be scary, so for this second visit we let her go with us.
We went prepared this time too. We packed a bag full of toys and treats and a portable DVD player with a small case full of favorite movies, hoping we wouldn't need any of it. I prayed and prayed she would fall asleep and we left extra early so we could drive around, because falling asleep in the car was one of the sure fire ways to get her to take a nap.
We drove around looking at the outside of a few of the houses we had scheduled to see with our realtor later and tried to keep the atmosphere in the car calm and relaxing to help. Fifteen minutes into the ride I had almost given up hope that she was going to fall asleep, but then her eyes drooped and a minute later she was out!
I pulled as close to the front door as we could because the wind had picked up and that was one sure fire way to wake her up. The Hubs managed to get her out and into the building still asleep while I parked the car, checked us in and they let us go straight back to a room to help keep her asleep. I got Bug settled in with a book and a snack while we waited for Dr. W.
We carefully got the electrodes placed on her head, she stirred a little but Dr. W managed to get her all hooked up. He decided while she was asleep he wanted to rerun the fluid and OAE tests. We got all the way through those- still no fluid and no response from her eardums from the OAE, it was just conclusive now. I still tried to hold on to hope while we were finishing getting her hooked up for the ABR. Then she started to stir.
My heart sank, she rarely settled back into sleep after stirring. I hurried and pulled out the DVD player to be ready and got Curious George fired up. He's her very favorite. She looked around at all of us and for a moment looked like she was going to be upset, but then she saw the movie and I sighed with relief as she sat and watched and let Dr. W start running the ABR on her right ear.
A little note about the ABR, it is a test that checks to see if the nerves in the inner ear are connecting properly with the brain. It is one of, if not the, conclusive test about whether or not someone is deaf or partially deaf and at what range you can hear. I only knew enough at this point to know it could tell me if my child was deaf and I was certainly ready to know for sure if she could hear anything.
So back to the test. We needed her to sit still and be quite for at least 30 minutes, probably longer. Now that she was awake I worried if this was going to work and wished we hadn't wasted time running the other tests and lost precious unconscious minutes, but she sat there.
The longer she sat, the more I was sure we were finally going to get some answers. I watched Dr. W's screen as he pressed different buttons. There were lines on the screen that looked a little like heart monitor blips and I watched as he tested things and new lines showed up that he highlighted and dragged up to compare to a line that didn't change and had a word like standard or sample next to it.
The more I watched, the less hopeful I was. I tried not to be, telling myself I had no idea what those blips meant. Bug was surprisingly quite and when she did talk or ask me questions she whispered. Dr. W let her look at some model ears and hearing aids and she snuck out twice to get a candy from the very nice receptionist and a drink.
The test lasted about a little over and hour for her right ear and when tried to do the left, she was done, done, done. She didn't want anyone touching her head or coming close to her ears. Still, we'd gotten one ear done, right?
Dr. W took a breath, "Well, without being able to do both ears I can't really give you a full diagnosis. I don't want to tell you something that could be untrue."
ARE YOU KIDDING ME?
He kept going, "If she were my child, I would try and schedule a sedated ABR." He told us he thought we could do one in a town 45 minutes from us but if it was him, he'd go to the Primary Children's Hospital that was 4 hours away. We agreed we wanted to go to a place that specialized in Children's medicine and Diagnosis because then we could be sure about what they told us and they could refer us to anyone else we might see.
Dr. W couldn't refer us to their Audiology Department himself, I still don't know why, but he would write a recommendation for our pediatrician Dr. P to review and send on for his referral that day. Dr. W let us know he was there for us for any questions we had while we waited for that appointment and any subsequent hearing needs we might have in the future. He was really nice and despite the fact that we left with no definite answers again I felt he did the best he could under the circumstances.
Had I known what a trial it was going to be actually getting our referral through our Pedatrician's office to Primary Children's I might have just asked if we couldn't try again.
It was hard walking out of that office again with no answers. It was hard watching from day to day and wondering if Tiny could hear anything. It was hard, but I kept telling myself, at least it's another step in the right direction.
This is all a process, and sometimes as a parent I've wanted to take a chainsaw to all the red tape and forms and insurance messes and the medical bureaucracy, and just say "This is crap. You're supposed to be helping me not leaving me with more questions and more weight on my already heavy shoulders!" But, if there is one thing I've come to realize it's this- even having to fight to go forward, it was still forward.
It was more of a relief this time to be going in. The Hubs and I were sure we were going to come out with clear answers we could act on to help Tiny.
I am not ashamed to admit that the day before her appointment we tried to run her ragged, kept her up past her bedtime, and woke her up early the next day and kept her going and going and going until it was time to get in the car for the appointment. Bug came this time, because as it turns out, she was very worried for her little sister and even though she had fun with cousins the last time, she was very upset that we didn't take her.
She told us she wanted to be there for her little sister so she wasn't scared. She is very smart and attentive for her age and she had heard us talking about everything and had started to form her own worries. She also knew Doctor visits could be scary, so for this second visit we let her go with us.
We went prepared this time too. We packed a bag full of toys and treats and a portable DVD player with a small case full of favorite movies, hoping we wouldn't need any of it. I prayed and prayed she would fall asleep and we left extra early so we could drive around, because falling asleep in the car was one of the sure fire ways to get her to take a nap.
We drove around looking at the outside of a few of the houses we had scheduled to see with our realtor later and tried to keep the atmosphere in the car calm and relaxing to help. Fifteen minutes into the ride I had almost given up hope that she was going to fall asleep, but then her eyes drooped and a minute later she was out!
I pulled as close to the front door as we could because the wind had picked up and that was one sure fire way to wake her up. The Hubs managed to get her out and into the building still asleep while I parked the car, checked us in and they let us go straight back to a room to help keep her asleep. I got Bug settled in with a book and a snack while we waited for Dr. W.
We carefully got the electrodes placed on her head, she stirred a little but Dr. W managed to get her all hooked up. He decided while she was asleep he wanted to rerun the fluid and OAE tests. We got all the way through those- still no fluid and no response from her eardums from the OAE, it was just conclusive now. I still tried to hold on to hope while we were finishing getting her hooked up for the ABR. Then she started to stir.
My heart sank, she rarely settled back into sleep after stirring. I hurried and pulled out the DVD player to be ready and got Curious George fired up. He's her very favorite. She looked around at all of us and for a moment looked like she was going to be upset, but then she saw the movie and I sighed with relief as she sat and watched and let Dr. W start running the ABR on her right ear.
A little note about the ABR, it is a test that checks to see if the nerves in the inner ear are connecting properly with the brain. It is one of, if not the, conclusive test about whether or not someone is deaf or partially deaf and at what range you can hear. I only knew enough at this point to know it could tell me if my child was deaf and I was certainly ready to know for sure if she could hear anything.
So back to the test. We needed her to sit still and be quite for at least 30 minutes, probably longer. Now that she was awake I worried if this was going to work and wished we hadn't wasted time running the other tests and lost precious unconscious minutes, but she sat there.
The longer she sat, the more I was sure we were finally going to get some answers. I watched Dr. W's screen as he pressed different buttons. There were lines on the screen that looked a little like heart monitor blips and I watched as he tested things and new lines showed up that he highlighted and dragged up to compare to a line that didn't change and had a word like standard or sample next to it.
The more I watched, the less hopeful I was. I tried not to be, telling myself I had no idea what those blips meant. Bug was surprisingly quite and when she did talk or ask me questions she whispered. Dr. W let her look at some model ears and hearing aids and she snuck out twice to get a candy from the very nice receptionist and a drink.
The test lasted about a little over and hour for her right ear and when tried to do the left, she was done, done, done. She didn't want anyone touching her head or coming close to her ears. Still, we'd gotten one ear done, right?
Dr. W took a breath, "Well, without being able to do both ears I can't really give you a full diagnosis. I don't want to tell you something that could be untrue."
ARE YOU KIDDING ME?
He kept going, "If she were my child, I would try and schedule a sedated ABR." He told us he thought we could do one in a town 45 minutes from us but if it was him, he'd go to the Primary Children's Hospital that was 4 hours away. We agreed we wanted to go to a place that specialized in Children's medicine and Diagnosis because then we could be sure about what they told us and they could refer us to anyone else we might see.
Dr. W couldn't refer us to their Audiology Department himself, I still don't know why, but he would write a recommendation for our pediatrician Dr. P to review and send on for his referral that day. Dr. W let us know he was there for us for any questions we had while we waited for that appointment and any subsequent hearing needs we might have in the future. He was really nice and despite the fact that we left with no definite answers again I felt he did the best he could under the circumstances.
Had I known what a trial it was going to be actually getting our referral through our Pedatrician's office to Primary Children's I might have just asked if we couldn't try again.
It was hard walking out of that office again with no answers. It was hard watching from day to day and wondering if Tiny could hear anything. It was hard, but I kept telling myself, at least it's another step in the right direction.
This is all a process, and sometimes as a parent I've wanted to take a chainsaw to all the red tape and forms and insurance messes and the medical bureaucracy, and just say "This is crap. You're supposed to be helping me not leaving me with more questions and more weight on my already heavy shoulders!" But, if there is one thing I've come to realize it's this- even having to fight to go forward, it was still forward.
Audiologist- Visit #1
February is a busy month for us generally as we prepare for Bug's
birthday and Valentines Day and it always seems to have a lot of
activities for a cold month. Besides all this our family started looking
for our first home, so the month was busy, but I still dreaded the appointment at the end, but the day finally came. At this point we had contacted our families and asked for prayers and good thoughts that if possible Tiny's hearing could be restored or that it was something minor that could be fixed easily. We'd done a little research and we were really hoping it was going to be a drainage problem and that tubes could be the solution to her not hearing, but we were also trying not to get our hopes up.
I had a wonderful sister offer to watch Bug so the Hubs and I could focus completely on Tiny and what the doctor was saying. We got to the small front office of the audiologist and there was an older couple waiting. We got the paperwork and sat down to fill it out, finished it and sat and waited to be taken back.
Tiny was a bit of handful as there wasn't really kid stuff for her to do, but she was having fun being with her Dad who is her all time favorite person 99% of the time and other other 1% he's probably still her favorite but she's sassy like that.
I couldn't help but look at all the informational posters and art around the small room. The thing that drew my attention over and over though was a framed quote by Helen Keller. It read, "Blindness separates people from things; deafness separates people from people."
It broke my heart to admit to myself, but I could fully relate to this. During the time after the first hearing test in our home and this appointment, I realized just how disconnected Tiny was from us. She would interact with the world around her, but moments of connection with people, even with us her family, weren't long or really deep. It also compounded what a nursery teacher had said to me not to long before this visit. "We love your daughter and she is mostly sweet, but she doesn't really play with the other kids. She either fights over a toy and gets angry or lately she just finds a toy and goes and sits in a corner. Is this normal for her?"
I decided to tell her a little about what was going on and that I appreciated that she was keeping an eye on my daughter and had felt comfortable voicing her concerns. If we hadn't already been on this journey, I might have been offended at the implication that something was "wrong" with my child, but by this point, I was finally really letting myself see Tiny's situation for what is was- not normal.
Even knowing that her ears weren't working properly, the almost month it took before this first appointment was frustrating. I kept having to remind myself, "She can't hear you and yelling is never a good option," especially when her older sister was around to hear it or was the cause of it. What good did yelling do? Nothing. Not even for my hearing daughter, it only made her sad and scared and me feel foolish and sad I had done it. I did my best to remember that, and to not yell but it was still hard.
So back to the audiologists visit. They finally called us back and the nurse tried to put probes in her ears, but the secretary came and needed something from me, a copy of an insurance card or something, so I got up and left to finish up what they needed. She gave me a few candies when we were done because we could both hear Tiny down the hall in the other room freaking out.
Candy worked for a few minutes when I got back, but she still was trying to pull the probes out before the tests were finished. Her Dad managed to get her to hold still long enough to get some readings and the nurse left. Then the Audiologist came in, Dr. W.
He looked over the readings and wanted to try one more time, nothing doing, she would not leave the probes in long enough. So he decided he'd like to try some booth tests.
For those of you that don't know what that is, they take your child into a semi-soundproof box and try and see if they respond to different tones, pitches, frequencies and at different decibels to see when/if they respond. They also have lights that flick on and off and some have screens in them that flash pictures.
Before the booth test he wanted to talk to us and get some more history. We told him how she passed her newborn screening, how she had started to talk, how we noticed things that made me worry, about the visit with Dr. P the new pediatrician, all of it. He took notes and asked about family history.
Tiny was squirming all over and since we'd moved rooms, she wanted to explore and touch everything, including all the fall apart ear models in the room and the machines and computers. We were trying to keep her interested in the toys and snacks we brought while we talked to him, but she just wasn't very happy about it all.
So we cut to the chase and tried the booth test. She wouldn't go in.
So her Dad went in and she shut him in and stayed out. So we went back to the receptionist, got another candy and tried to bribe her to go in with her Dad. She did, but wanted to come right back out after getting the candy.
I helped keep the door shut while he tried to play with her on his lap with a few toys that happened to be in the booth. She finally stayed in but went in a corner and refused to let him hold her or look at anyone. After she calmed down, she let her Dad hold her over his shoulder, but since she wasn't facing the flashing lights and every time he tried to turn so she might be, she freaked out. So, finally Dr. W shook his head and said we were done.
He asked us if she still took naps and what times those were and we told him, she hadn't been a regular napper for a few months now, we could count on a nap maybe every other day or ever three days and the time could be anywhere in a four block time frame that she went down. It was at this point I regretted not being a mom that made my kids have regular daily naps at a regular time, or at least Tiny.
Still, he suggested we make another appointment and try and come back while she was sleeping. We should make it an extra long appointment as well, because if we could get her to be asleep, they could run a lot more tests without her pulling on things and he specifically wanted to run a test call an ABR or Automated Brain stem Response test and she needed to be quite and still for a long time with that one.
He told us he didn't want to make any judgements yet, since the OAE tests never got to fully finish with her pulling on the probes, but they had been able to get results from the fluid tests and it didn't appear she had any fluid behind her eardrums that would keep them from functioning.
I felt sick. I also felt frustrated. We still didn't really have answers. We had to come again and hope that we could have her be asleep and stay asleep long enough to get any. All of these were big maybes because who knew if she would go to sleep at the time we wanted, or STAY asleep for that matter, but what choice did we really have?
So we gathered up our stuff, went to the front office and scheduled another appoint. It was the end of February by now and the next appointment they had available with the extended time we needed, and in their office here in our town, wasn't until the middle of March. It was hard, I wanted answers now. I took a breath and sucked it up, and asked they call us if there were any cancellations and we could come in sooner, then we left.
My eyes read the quote again as we left, "Blindness separates people from things; deafness separates people from people."
My heart ached and I wondered and worried at how separate Tiny was from us. Did she feel it? Did she know we loved her? Did she feel alone and confused? I knew she had heard us when she was a baby, but when had she stopped hearing us? What was the last thing I said, that she really heard? Was I yelling and angry at her because she was 'ignoring' me? Was it the sound of my voice saying something kind?
I can't lie and say I haven't shouted since that day, I know I have- in frustration and in upset- at her sister or life or even her despite the fact that she can't hear me. But when I have I almost always regret it and apologize to both my girls, the one that can hear my voice and the one that can't. I try and remind myself that not only do words matter, but how we say them, and how loudly we say them can matter just as much. Sometimes, even if people can't hear us, the words are worth saying anyway.
Observations: I wish, when initially making this appointment, I had asked what kind of tests they would be running and what we could do to help make them go more smoothly. Had I known it was better she be asleep, I would have tried from this initial visit. I also would have brought more than a fruit snack and a favorite stuffed animal and water bottle if I'd known they didn't see kids often so there wasn't much for Tiny to do or look at. I knew generalities, but not specifics, and I learned since this appointment to ask more initial questions to save ourselves rescheduling and frustration.
I had a wonderful sister offer to watch Bug so the Hubs and I could focus completely on Tiny and what the doctor was saying. We got to the small front office of the audiologist and there was an older couple waiting. We got the paperwork and sat down to fill it out, finished it and sat and waited to be taken back.
Tiny was a bit of handful as there wasn't really kid stuff for her to do, but she was having fun being with her Dad who is her all time favorite person 99% of the time and other other 1% he's probably still her favorite but she's sassy like that.
I couldn't help but look at all the informational posters and art around the small room. The thing that drew my attention over and over though was a framed quote by Helen Keller. It read, "Blindness separates people from things; deafness separates people from people."
It broke my heart to admit to myself, but I could fully relate to this. During the time after the first hearing test in our home and this appointment, I realized just how disconnected Tiny was from us. She would interact with the world around her, but moments of connection with people, even with us her family, weren't long or really deep. It also compounded what a nursery teacher had said to me not to long before this visit. "We love your daughter and she is mostly sweet, but she doesn't really play with the other kids. She either fights over a toy and gets angry or lately she just finds a toy and goes and sits in a corner. Is this normal for her?"
I decided to tell her a little about what was going on and that I appreciated that she was keeping an eye on my daughter and had felt comfortable voicing her concerns. If we hadn't already been on this journey, I might have been offended at the implication that something was "wrong" with my child, but by this point, I was finally really letting myself see Tiny's situation for what is was- not normal.
Even knowing that her ears weren't working properly, the almost month it took before this first appointment was frustrating. I kept having to remind myself, "She can't hear you and yelling is never a good option," especially when her older sister was around to hear it or was the cause of it. What good did yelling do? Nothing. Not even for my hearing daughter, it only made her sad and scared and me feel foolish and sad I had done it. I did my best to remember that, and to not yell but it was still hard.
So back to the audiologists visit. They finally called us back and the nurse tried to put probes in her ears, but the secretary came and needed something from me, a copy of an insurance card or something, so I got up and left to finish up what they needed. She gave me a few candies when we were done because we could both hear Tiny down the hall in the other room freaking out.
Candy worked for a few minutes when I got back, but she still was trying to pull the probes out before the tests were finished. Her Dad managed to get her to hold still long enough to get some readings and the nurse left. Then the Audiologist came in, Dr. W.
He looked over the readings and wanted to try one more time, nothing doing, she would not leave the probes in long enough. So he decided he'd like to try some booth tests.
For those of you that don't know what that is, they take your child into a semi-soundproof box and try and see if they respond to different tones, pitches, frequencies and at different decibels to see when/if they respond. They also have lights that flick on and off and some have screens in them that flash pictures.
Before the booth test he wanted to talk to us and get some more history. We told him how she passed her newborn screening, how she had started to talk, how we noticed things that made me worry, about the visit with Dr. P the new pediatrician, all of it. He took notes and asked about family history.
Tiny was squirming all over and since we'd moved rooms, she wanted to explore and touch everything, including all the fall apart ear models in the room and the machines and computers. We were trying to keep her interested in the toys and snacks we brought while we talked to him, but she just wasn't very happy about it all.
So we cut to the chase and tried the booth test. She wouldn't go in.
So her Dad went in and she shut him in and stayed out. So we went back to the receptionist, got another candy and tried to bribe her to go in with her Dad. She did, but wanted to come right back out after getting the candy.
I helped keep the door shut while he tried to play with her on his lap with a few toys that happened to be in the booth. She finally stayed in but went in a corner and refused to let him hold her or look at anyone. After she calmed down, she let her Dad hold her over his shoulder, but since she wasn't facing the flashing lights and every time he tried to turn so she might be, she freaked out. So, finally Dr. W shook his head and said we were done.
He asked us if she still took naps and what times those were and we told him, she hadn't been a regular napper for a few months now, we could count on a nap maybe every other day or ever three days and the time could be anywhere in a four block time frame that she went down. It was at this point I regretted not being a mom that made my kids have regular daily naps at a regular time, or at least Tiny.
Still, he suggested we make another appointment and try and come back while she was sleeping. We should make it an extra long appointment as well, because if we could get her to be asleep, they could run a lot more tests without her pulling on things and he specifically wanted to run a test call an ABR or Automated Brain stem Response test and she needed to be quite and still for a long time with that one.
He told us he didn't want to make any judgements yet, since the OAE tests never got to fully finish with her pulling on the probes, but they had been able to get results from the fluid tests and it didn't appear she had any fluid behind her eardrums that would keep them from functioning.
I felt sick. I also felt frustrated. We still didn't really have answers. We had to come again and hope that we could have her be asleep and stay asleep long enough to get any. All of these were big maybes because who knew if she would go to sleep at the time we wanted, or STAY asleep for that matter, but what choice did we really have?
So we gathered up our stuff, went to the front office and scheduled another appoint. It was the end of February by now and the next appointment they had available with the extended time we needed, and in their office here in our town, wasn't until the middle of March. It was hard, I wanted answers now. I took a breath and sucked it up, and asked they call us if there were any cancellations and we could come in sooner, then we left.
My eyes read the quote again as we left, "Blindness separates people from things; deafness separates people from people."
My heart ached and I wondered and worried at how separate Tiny was from us. Did she feel it? Did she know we loved her? Did she feel alone and confused? I knew she had heard us when she was a baby, but when had she stopped hearing us? What was the last thing I said, that she really heard? Was I yelling and angry at her because she was 'ignoring' me? Was it the sound of my voice saying something kind?
I can't lie and say I haven't shouted since that day, I know I have- in frustration and in upset- at her sister or life or even her despite the fact that she can't hear me. But when I have I almost always regret it and apologize to both my girls, the one that can hear my voice and the one that can't. I try and remind myself that not only do words matter, but how we say them, and how loudly we say them can matter just as much. Sometimes, even if people can't hear us, the words are worth saying anyway.
Observations: I wish, when initially making this appointment, I had asked what kind of tests they would be running and what we could do to help make them go more smoothly. Had I known it was better she be asleep, I would have tried from this initial visit. I also would have brought more than a fruit snack and a favorite stuffed animal and water bottle if I'd known they didn't see kids often so there wasn't much for Tiny to do or look at. I knew generalities, but not specifics, and I learned since this appointment to ask more initial questions to save ourselves rescheduling and frustration.
Following the "Mommy Instincts"
So after the doctors visit I looked into the early intervention in our area. It's run by the college and I knew people that had taken their kids there. I'd gotten mixed reviews from parents. Some said it was great for their child, others said their child screamed and wouldn't calm down and hated it. Some loved the teachers, others felt like they didn't listen to their concerns. So then I got mixed feelings about it.
It was also the end of October/beginning of November and their next session or semester didn't start until January, and while they probably would have started the process of getting us enrolled, the Holiday's were really pulling at my attention strings. I love Halloween and Thanksgiving and Christmas are big family times.
So, we just kept treating Tiny like she could hear us, but more and more I realized I didn't want to take her in to speech therapy if she couldn't hear what was going on. How could speech therapy help my child if she couldn't hear?
So I decided to get another hearing test done. Tiny was a home birth, it was hard and amazing and also considered "uneventful", except you know, the whole birthing a baby part. She was on time and healthy. At the time she was born my midwife didn't do hearing screenings, but I learned from a friend who had her baby after me that she did them now and since we had birthed with her, she would do it for free.
I admit, even though I loved her, I was terribly scared to call and set up the appointment. What if all my fears were true? What if the test wasn't conclusive? It took me until the middle of December to drum up enough courage and then busy schedules and holidays took more time until we could get an appointment.
Then, one early morning in January when the girls were first up and the hubs had just gotten to bed after his night shift, she texted me, "I'm coming into town, I have my kit with me, can I just swing by and we can do the test?"
I immediately texted back "That would be great! Thanks so much!"
Twenty minutes later there was a quiet knock on my door and I let her in. She got her machine out and tested it to make sure it was working properly. Then we got Tiny on my lap and distracted by watching a movie on the TV so she'd leave the probes in her ears.
She pushed some buttons and we all stayed quiet, I tried not to watch the little screens as she "hummed" and decided to check her machine again. Then she ran the test again.
I could feel my panic rising as she took the probes and started to coil the tubes. "I'm so sorry, I'm not getting a reading," I held my breath, "in either ear."
I pursed my lips, and held Tiny a little closer while I nodded and asked, "What does that mean?"
She shook her head, "I can't say for sure, but I would get her into an audiologist immediately. I'd also try and make noises behind her, turn on the vacuum or loud music right behind her and and see if you can get any response in the mean time. I'm so sorry."
She gave me the number to one she recommended in town and a hug and then had to be off to her next appointment.
I sat back on the couch, silently watching Tiny watch Elmo as tears threatened to slip down my face. Bug wanted breakfast and we had things planned for the day, so I needed to hold it together.
I did cry a little over the scrambled eggs and cereal I got my girls and then I went into my office and forced myself to work on a design project I was mocking up for someone. Every few seconds my thoughts would turn to the worries, and every few minutes I would look at her and wonder. Two hours of this, and I'd gotten little done. I wanted to wake my husband, but I didn't. He'd gotten to bed late, had mentioned it had been a rough night at his job, and he had work again tonight. Besides, one test only told us she couldn't hear, not what had caused it or if it was reversible, right? It still took everything in my power not to go and wake him up.
I did finally try and startle her. I quietly got the vacuum and plugged it in and set it up right behind her. She didn't notice. We have a vacuum you can turn on and it is loud, but it doesn't rumble and the brushes don't move until you flip another switch. So I did the first, nothing. My heart sank. So I turned on the second switch and tipped the vacuum so the brush would activate and vibrate the floor. She jumped. More heart sinking and I hurried and put it away and ran back into my office panicked.
I look back and maybe I ought to have woken my husband at this point, but I called my mom and told her what had happened, and I cried, a lot, with my office door closed, gushing all my fears and worries. "I just had to tell someone. I feel like I'm going crazy and Josh needs his sleep." She's a mom, so she could understand. She listened, tried to help me gain some calm, and said she'd pray for us and told me to call and make an appointment.
I pulled it together, called and left a message when there was no answer, then the girls and I went and ran the errands that needed doing for the day. By the time we got back my husband was up and I couldn't hold it together any longer. The minute I started crying, he knew something was up. I told him what the midwife had said, that I'd already called to set up and appointment and maybe it was nothing.
He said something my mom said, "Well, look at it this way, if she can't hear at least we can take comfort in the fact that she wasn't just ignoring us this whole time." It was a small comfort, but I knew what he meant.
When the weekend was over, I got a call back from the Audiologist. His office was actually a satellite office in our town and he was only there Tuesdays and Thursdays, we couldn't get an appointment for another few weeks, almost a month.
So now there was more waiting, and only a little relief from the nagging in my head. I had one answer, that only served to open up a million more.
I'm not sure I'll ever be able to forgive myself for ignoring my instincts, denying my doubts about what family and friends were saying, or even our well meaning doctor, for so long. I don't know if I'll ever be able to let go of the guilt of "what might have been" if I'd just listened to myself at the start, but I hope someday Tiny will be able to.
((At the end of a lot of my subsequent posts I plan to put things we should have taken note of sooner or asked about at a specific time or appointment, instead of waiting. Hopefully these Observations might help someone else.
Observations: One clue we should have picked up on, but chose to ignore, was that she would push the volume buttons way up high on the TV, but then would never cared if we put the MUTE on. At first we just figured she liked the pictures more than the sounds or simply didn't care because we kept the TV pretty quite when there was something on. We also should have noticed that when I first started to worry, she rarely startled, and after this point, unless you touched her or she could feel you coming or you jumped out at her and she could see you, she didn't really startle at all. She liked to stomp almost anytime we were walking. We figure it was because she enjoyed the feeling or could feel the floor of our rental vibrate. She tended to like toys that lit up or moved, but didn't really care about the baby piano that just made noise. She'd push on it, but when it didn't do anything, she lost interest pretty fast. Some of these things can be behavior things, but some of them can be signs. If you're worried, don't wait, make an appointment with and Audiologist.))
It was also the end of October/beginning of November and their next session or semester didn't start until January, and while they probably would have started the process of getting us enrolled, the Holiday's were really pulling at my attention strings. I love Halloween and Thanksgiving and Christmas are big family times.
So, we just kept treating Tiny like she could hear us, but more and more I realized I didn't want to take her in to speech therapy if she couldn't hear what was going on. How could speech therapy help my child if she couldn't hear?
So I decided to get another hearing test done. Tiny was a home birth, it was hard and amazing and also considered "uneventful", except you know, the whole birthing a baby part. She was on time and healthy. At the time she was born my midwife didn't do hearing screenings, but I learned from a friend who had her baby after me that she did them now and since we had birthed with her, she would do it for free.
I admit, even though I loved her, I was terribly scared to call and set up the appointment. What if all my fears were true? What if the test wasn't conclusive? It took me until the middle of December to drum up enough courage and then busy schedules and holidays took more time until we could get an appointment.
Then, one early morning in January when the girls were first up and the hubs had just gotten to bed after his night shift, she texted me, "I'm coming into town, I have my kit with me, can I just swing by and we can do the test?"
I immediately texted back "That would be great! Thanks so much!"
Twenty minutes later there was a quiet knock on my door and I let her in. She got her machine out and tested it to make sure it was working properly. Then we got Tiny on my lap and distracted by watching a movie on the TV so she'd leave the probes in her ears.
She pushed some buttons and we all stayed quiet, I tried not to watch the little screens as she "hummed" and decided to check her machine again. Then she ran the test again.
I could feel my panic rising as she took the probes and started to coil the tubes. "I'm so sorry, I'm not getting a reading," I held my breath, "in either ear."
I pursed my lips, and held Tiny a little closer while I nodded and asked, "What does that mean?"
She shook her head, "I can't say for sure, but I would get her into an audiologist immediately. I'd also try and make noises behind her, turn on the vacuum or loud music right behind her and and see if you can get any response in the mean time. I'm so sorry."
She gave me the number to one she recommended in town and a hug and then had to be off to her next appointment.
I sat back on the couch, silently watching Tiny watch Elmo as tears threatened to slip down my face. Bug wanted breakfast and we had things planned for the day, so I needed to hold it together.
I did cry a little over the scrambled eggs and cereal I got my girls and then I went into my office and forced myself to work on a design project I was mocking up for someone. Every few seconds my thoughts would turn to the worries, and every few minutes I would look at her and wonder. Two hours of this, and I'd gotten little done. I wanted to wake my husband, but I didn't. He'd gotten to bed late, had mentioned it had been a rough night at his job, and he had work again tonight. Besides, one test only told us she couldn't hear, not what had caused it or if it was reversible, right? It still took everything in my power not to go and wake him up.
I did finally try and startle her. I quietly got the vacuum and plugged it in and set it up right behind her. She didn't notice. We have a vacuum you can turn on and it is loud, but it doesn't rumble and the brushes don't move until you flip another switch. So I did the first, nothing. My heart sank. So I turned on the second switch and tipped the vacuum so the brush would activate and vibrate the floor. She jumped. More heart sinking and I hurried and put it away and ran back into my office panicked.
I look back and maybe I ought to have woken my husband at this point, but I called my mom and told her what had happened, and I cried, a lot, with my office door closed, gushing all my fears and worries. "I just had to tell someone. I feel like I'm going crazy and Josh needs his sleep." She's a mom, so she could understand. She listened, tried to help me gain some calm, and said she'd pray for us and told me to call and make an appointment.
I pulled it together, called and left a message when there was no answer, then the girls and I went and ran the errands that needed doing for the day. By the time we got back my husband was up and I couldn't hold it together any longer. The minute I started crying, he knew something was up. I told him what the midwife had said, that I'd already called to set up and appointment and maybe it was nothing.
He said something my mom said, "Well, look at it this way, if she can't hear at least we can take comfort in the fact that she wasn't just ignoring us this whole time." It was a small comfort, but I knew what he meant.
When the weekend was over, I got a call back from the Audiologist. His office was actually a satellite office in our town and he was only there Tuesdays and Thursdays, we couldn't get an appointment for another few weeks, almost a month.
So now there was more waiting, and only a little relief from the nagging in my head. I had one answer, that only served to open up a million more.
I'm not sure I'll ever be able to forgive myself for ignoring my instincts, denying my doubts about what family and friends were saying, or even our well meaning doctor, for so long. I don't know if I'll ever be able to let go of the guilt of "what might have been" if I'd just listened to myself at the start, but I hope someday Tiny will be able to.
((At the end of a lot of my subsequent posts I plan to put things we should have taken note of sooner or asked about at a specific time or appointment, instead of waiting. Hopefully these Observations might help someone else.
Observations: One clue we should have picked up on, but chose to ignore, was that she would push the volume buttons way up high on the TV, but then would never cared if we put the MUTE on. At first we just figured she liked the pictures more than the sounds or simply didn't care because we kept the TV pretty quite when there was something on. We also should have noticed that when I first started to worry, she rarely startled, and after this point, unless you touched her or she could feel you coming or you jumped out at her and she could see you, she didn't really startle at all. She liked to stomp almost anytime we were walking. We figure it was because she enjoyed the feeling or could feel the floor of our rental vibrate. She tended to like toys that lit up or moved, but didn't really care about the baby piano that just made noise. She'd push on it, but when it didn't do anything, she lost interest pretty fast. Some of these things can be behavior things, but some of them can be signs. If you're worried, don't wait, make an appointment with and Audiologist.))
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