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hearing loss

I know it’s only the 21st, but I am already eager to put this month behind me. It’s been another month of ear issues (both ears this month) for Josh and we are not sure exactly what’s going on. We haven’t been able to get his ears stable enough/healthy long enough for even an audiology evaluation since October. He just finished up another course of strong, broad spectrum antibiotics. I have an essay coming out soon in The Mighty that will shed some light on how I feel about our latest run in with antibiotics.

In light of all of this, it is time for some mood-boosting gratitude.

  1. There is an owl living in one of the large pine trees behind my house. I hear him hooting each night at about 5:30 pm (dusk here in Minnesota in January) and sometimes just before dawn. I went out into the woods behind my house on Sunday, with my long wool coat over my PJ’s–it was ten below zero at the time, and I listened just below the tree. I cannot tell you what a singular thrill it is to hear an owl up close. But then, he decided to swoop down on some prey and I saw his wings spread over me (I wasn’t the prey). It will likely be one of the most awe-inspiring moments of my life. I feel most protective of this owl and sometimes I fancy the owl is protecting me.
  2. I’ve finally set up my own writing room in the upper level of my house. It is a light, airy space. It is a piece of heaven in my own home.
  3. Trampled by Turtle’s song “Duluth,” which gets me through these cold winters. “Still I like the quiet/Of Duluth in the winter/In the sacred bond/There’s no place like home.”
  4. The rosary. I’m not Catholic, but I’ve had lots of Catholics in my life, including my dad’s whole family. All of my kids have spent time in Catholic schools; now, Josh joins the ranks. He’s learned to pray the rosary. I’m learning too. I’ve thought much about how Mary was acquainted with this experience of watching her child suffer. I feel a kinship with her when I pray the rosary. Although, I’m not sure I’m doing it right, maybe “right” doesn’t matter so much as the act of saying this prayer with a willing heart.
  5. I was given the guidance to get my hands on a copy of Paul Kalanithi’s book When Breath Becomes Air. I elevated this book above the waiting 25 or so books on my “to read” list. I read this book in less than 24 hours; I will read this book again. It is a magnificent, life-changing read. I thank Paul for leaving behind surgery to write before he passed away last March. God be with you, Dr. Kalanithi. You’ve made a huge difference in how I view life, God, vocation, the act of writing, and how I view my son’s doctors and surgeons (I think I wanted them to be small gods–now I realize it can never be so; God can use members of the medical profession, but they will never be perfect, as life will never be perfect).
  6. My thesis project seems to be falling into place, during this second semester of thesis writing; and I have a new blog to support the putting of my thesis out into the world, when it is time. See www.heidifettigparton.com.
  7. I get to see the below view when I leave my local food co-op; even beautiful on cold winter mornings.

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I’ve noted a definite trend over the past year: my postings on this blog have migrated largely into the realm of poetry. It was not a conscious migration. I think that when I am in the midst of such uncertainty, as we’ve been with Josh’s right ear, I need to use the sort of vision-scope that only comes through the lyrical. I am touching down into tender places; touching lightly so as not to upset any of the delicate balance we might have found on a given day (or week or month).

But this blog has, in the past, gone into great detail about Josh, my third child’s hearing loss journey. If you’re here because of your own (or your child’s) hearing loss, you may want to check out past entries to get all caught up. Still, I haven’t posted in a long time, so I need to update the timeline.

Josh is now six and has started Kindergarten. He still wears a hearing aid in his left ear, which shows moderate conductive loss (so it has slipped through the years from mild-moderate loss–we are not sure why he’s losing ground because conductive loss typically remains stable). This year, Josh is using an FM system at school and loves it–he loves hearing his teacher so clearly in his left ear.

In May, 2012 (at age 2.5), Josh had a tympanoplasty and an ossicular chain reconstruction, with a PORP (titanium rod) replacing his first two middle ear bones. He needed the tympanoplasty to repair his eardrum, although we would have waited until he was older if he hadn’t needed major dental surgery. The decision to replace his first two middle ear bones was made in the middle of his surgery. You can read more about this surgery on this blog if you look under “tympanoplasty.”

The surgery restored Josh’s hearing to (at one point) 10 db across all frequencies. It was pretty miraculous. We’d often forget to use Josh’s left hearing aid because he was hearing so well in his right ear, we wouldn’t even notice when his left ear went unaided. Still, within 5-6 months of the surgery, that ear started to steadily discharge an amber greasy matter. We saw our former ENT many times in the following two years; occasionally the discharge was cultured and never churned up anything. Perhaps his ear just couldn’t rid itself of ear wax, we were told.

In December of 2013, Josh’s hearing in his right ear started to decline–slowly, but steadily. We’d chip away at 5 db every 3-6 months. It was worse, for sure, when he had a cold. His former ENT raised the possibility of cholesteatoma and ordered a CT exam. The CT exam showed excess fluid in the ear and so Josh was put on three-week course of strong oral antibiotics (at age 4, this was Josh’s first time taking antibiotics–now it’s become routine) and it was hoped that all was resolved. It was summer then, so Josh seemed to improve (although his hearing never went back to 10 db–we did get to about 20 db).

During the 2014-2015 school year, Josh had more trouble again with his molars (all molars had been capped in his surgery at 2.5). Two of the roots became infected and he lost 2 molars–with spacers inserted in their place. Are the teeth issues tied to the middle ear issues? No one can tell us. We’ve been told Josh’s issues are syndromic, but after repeated testing, Josh’s genetic doctor has not found an exact cause or a similar case to Josh’s.

In March of 2015, Josh had terrible ear pain in his right ear (9 on a scale of 10–and Josh is pretty experienced with rating pain). On the way to the ER, the eardrum ruptured, relieving his pain–and he was placed on more oral antibiotics, instead of drops (because it was the ER, after all). The next morning, Josh awoke in a panic; he had absolutely no hearing in his right ear. He also ran a fever for about a week, in spite of the antibiotics. His infection eventually healed, but his hearing stayed at about 25-30 db. Three weeks later, the same thing happened; fever and loss of hearing his ear. His ENT refused to engage in a conversation about what was going on and said Josh was unlikely to have cholesteatoma, because the CT scan a year earlier hadn’t shown it.

We went to the Mayo Clinic for a second opinion. Our new ENT suggested sedating Josh to go in and see what was going on. He told us that CT scans and MRI’s don’t always catch cholesteatoma (and it can hide out in the mastoids). On June 19, 2015, Josh was sedated at a hospital in Rochester, MN. The ENT came out from the OR to tell us that he was 1000% sure Josh had cholesteatoma–it was coming out of his ear and had wiped out some of the eardrum. He proceeded that afternoon with a five-hour surgery to remove the cholesteatoma in a wall up procedure (retaining Josh’s ear wall); tympanomastoidectomy.

Our ENT told us that he was confidant he got all of the cholesteatoma (although one can never be 100% sure because if a small speck is left, it comes back). Cholesteatoma is basically extra skin that gets in the ear and grows much like a tumor but is almost always benign. Where cholestetoma can wreak havoc is it can erode the ear bones, the facial nerve, and worst case, can grow near the brain and cause meningitis. Thus, it has to be dealt with if present.

After removal, cholesteatoma returns in 30% of the cases (I’ve seen the odds at 50% for children because they often have eustachian tube disfunction, which can create a pressure that pulls in the eardrum, creating a good environment for cholesteatoma). Our ENT also was able to retain Josh’s previous PORP because it wasn’t in the zone of the cholesteatoma.

By October of 2015, Josh’s hearing on the right had returned to 25 db across the frequencies. We tried a hearing aid, but Josh complained it was “echoey” and that the ear mold rubbed against the still-angry scar where they took cartilage for his new eardrum. So, we gave up on aiding the right side, for now.

Our ENT is monitoring Josh but did not propose a “second look” surgery at the six to eight month point, which is done when an ENT is not sure they got all the cholesteatoma and they want to go back in before any returning cysts get too large. While the cysts are yet small, an ENT has a better chance of eliminating all of the growth.

Our ENT told us if he did have to go back into Josh’s ear a second time, he’d likely do a “wall down” procedure, that would involve removing Josh’s ear wall and basically eliminate the outer ear, creating a large cavity that couldn’t ever get water in it and has to be cleaned out every six months. I’m not sure how Josh could have much hearing left after a “wall down” procedure. It’s so hard to think of Josh never being able to swim or play near water.

Well, Josh was almost at the five month point past surgery and we were feeling pretty good, especially since it seemed this tympanoplasty actually took and Josh’s new eardrum is holding up really well. Josh had a bad cold last week and then awoke on Thursday morning, as my poem references, with a fever and ear pain in his right ear. He was placed on antibiotics over the phone since his ENT at the Mayo Clinic cannot see him until this coming Thursday (the 19th). Josh’s hearing has been knocked out again too. This makes us quite worried about the return of cholesteatoma because colds causing ear infections were rare in Josh before cholesteatoma and they never knocked out his hearing.

We are still out here hoping and praying for the best possible result; and the ENT will unlikely be unable to “see” anything on Thursday, as cholesteatoma exists mostly within the middle ear. I’m sure Josh will be monitored more closely now, however. I’m not sure if this event is enough to have the ENT schedule a “second look” procedure. We aren’t eager for more surgery; we fear Josh having a lifetime of surgeries. We may even seek a third opinion if a wall-down procedure is proposed–because this is, after all, Josh’s entire lifetime ahead that will be impacted.

I remember 9/11/01. I remember sitting in the auditorium at the large corporation where I worked, watching the news coverage on the big screen with fellow employees. I remember the eerie empty skies as I walked through the parking lot to my car. I remember black plastic bags placed over empty gas pumps. I remember feeling uncertainty towards the future.

*Then*

I remember 9/11/09. I remember being sent away from the hospital by my midwife; being told I wasn’t in labor. I remember thinking, good, Joshua (he already had a name) won’t be born on 9/11. I remember eating brunch with Chris​ at The Good Earth Restaurant and having to lay down in the booth every five minutes to get through my contractions. I remember Chris taking this picture of me after we left the restaurant, just before he insisted on taking me back to the hospital where Josh would be born a few hours later. I remember looking at Josh’s “perfect” little ears that evening. I remember that one “perfect” evening of 9/11; it was our “before.” On 9/12/09 we would learn that Josh could not hear perfectly. I remember feeling uncertainty towards the future.

While in labor, just had brunch at Good Earth (39 wks, 5 days)

While in labor, just had brunch at Good Earth (39 wks, 5 days)

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I remember how love can enter even our most groundless state; how only love is the antidote to fear.

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I was nominated by my dear (and long-known) friend, Julie, on Facebook to record three things I am grateful for each day for five days. It’s been sort of a wild and crazy past few days, so instead, I’ve decided to record 15 gratitudes all at once. I have many gratitude lists on this blog and so I’ve decided to change things up a bit today with a photo list. Indeed, thanks to the iPhone, I always have a camera at hand these days and tend to take photos in some of my most grateful moments; moments when I can truly let myself into the overflowing joy and abundance that, while always present, often gets choked out by my affinity for worry and mindless clamoring after the ever-elusive sense of control.

15 Gratitudes:

The Stone Arch Bridge

The Stone Arch Bridge

One: I am immensely grateful that I live in a place where there is such an abundance of accessible green space, even in the heart of the city.

The Guthrie Theater

The Guthrie Theater

Two: I am grateful for the depth and variety of cultural experiences available in the Twin Cities area.

Presiding over the Mill City Farmer's Market

Presiding over the Mill City Farmer’s Market

Three: I am grateful that on any given day from May to October, I can purchase locally-grown organic produce at countless Farmer’s Markets available throughout the Twin Cities area.

They're Always Waiting for me

Four: I am grateful for books. They are always waiting for me, no matter how much time has elapsed since we last had time together.

snow dog

snow dog

Five: I am grateful that I spent so many years in the cold, frozen tundra of North Dakota. Now Minneapolis winters are (mostly) a breeze (except last winter–that was truly a North Dakota kind of winter).

Superior Hiking Trail

Superior Hiking Trail

Six: I am grateful for the preservation of wild places; places where people can hear their soul speak.

From The Minnesota History Center's Currently Running Toy Exhibit

From The Minnesota History Center’s Currently Running Toy Exhibit

Seven: I am grateful that “my past” is now being preserved as history. The Minnesota History Center’s Exhibit on toys from the 50s, 60s, and 70s is extremely well curated and so worth seeing. I hail the efforts of all historic preservationists everywhere.

Wild Flowers

Wild Flowers

Eight: I am grateful that beauty erupts of its own accord. Life is celebrated daily by all of creation. Sometimes, finding this beauty is just a matter of changing one’s point of view. In this photo, if I turned the other way, I’d see a broken old highway.

Cottage Flowers

Cottage Flowers

Nine: I am grateful that we have been given the tools to help cultivate beauty in this world, if we so choose.

Vintage bowling pins and croquet balls.

Vintage bowling pins and croquet balls.

Ten: I am grateful for the thrill of the hunt. Wooded trail or estate sale? Tough decision. Either place, I touch down into the soft, unexposed underside where my dreams, hopes, and greatest love resides.

A Room of One's Own Cottage.

A Room of One’s Own Cottage.

Eleven: I am grateful for this little yellow cottage; a place where my voice has found it’s way to paper this past year.

Olson Family Cabin (photo credit: Tiffany Rae Fettig).

Olson Family Cabin (photo credit: Tiffany Rae Fettig).

Twelve: I am grateful for this little brown cabin that my Grandpa Roy built; a place that contains most of my very best memories (because, like Neil Young, “in my mind I still need a place to go”–from Helpless).

La Jolla, Ca.

La Jolla, Ca.

Thirteen: I am grateful for the deep love I’ve had in my life, as well as the joy found in letting go, repeatedly, of that which I love.

A place where Deaf and Hard of Hearing children learn to listen and speak

A place where Deaf and Hard of Hearing children learn to listen and speak

Fourteen: I am grateful that Minnesota mandated newborn hearing screening by the time Josh was born; I am grateful for early intervention so that now I can hear my four-year old tell me that he “might get carried away and decide to be Darth Vader” this year for Halloween. I am so grateful I get to hear all of the funny little things Josh has to say everyday.

The One (who gets me)

The One (who gets me)

Fifteen: We risked a good deal for this love; in return, it gave us everything. Gratitude.

[A]nd the end of all of our exploring shall be to arrive where we started and know that place for the first time.

T.S. Eliot

 

I could make this post about music, since it’s Music Monday. And if I were to make this post about music, I’d tell you how, right now in the pouring rain, I am listening to Fleetwood Mac’s album The Dance, which was once a new album of this iconic 70s band’s songs revisited. And now the “new” album, The Dance, has become an old album (and I too have become old). And as I sit here with the relentless rain outside my window, I am moved by my nostalgia over the time in my life where I had nostalgia over the song Dreams, as heard on The Dance, because it reminded me of trips, driving across the vast, flat entirety of North Dakota to reach my grandparent’s home in Crosby, ND with my family in our gray Rambler station wagon, me hiding under a doll’s blanket, afraid of the thunder. I veritably tremble when I see that Landslide is ahead on the album. The song, Landslide, carries personal nostalgic value in my life and it is a nostalgic song about nostalgia. How can that all be? I’ve been reading too much Dr. Suess because this all seems entirely possible.

Nevertheless, this post is not about music. It is about Josh’s ear health.

So last Monday, Chris, Josh and I left our house at 6:30 am for Josh’s 8:30 am-awake MRI. I had prepared Josh for the MRI by having him watch a few videos on Youtube. You can find these videos on my Sensory Processing Disorder Pinterest page. It seemed that Josh was willing and able to sit for the MRI. We had completed all of the forms and had gone around and around with the nurse about the fact that Josh was not to be given any contrast for this exam. After a few phone calls, she finally believed me. Finally, we were walking into NASA’s control center (okay, that’s what it felt like outside the huge 3.0 MRI seen through the window), Chris in his track suit and me in my yoga gear, because these were the only non-metallic clothing we could find. Once we got in with the MRI technician and he read through our forms, he told us that he didn’t think Josh could have the MRI because of his titanium PORP. I told him I had verified with our ENT’s office that the PORP was indeed MRI safe. He told us that while it was definitely safe for a 1.5 strength MRI, it wasn’t for a 3.0 strength MRI. He shooed us out of the room to call the head radiologist.

We returned to the waiting area. Twenty minutes later, he found us and told us that the MRI was safe as long as Josh was perfectly still, but if he tried to sit up even slightly, the PORP could move. He clearly didn’t want to risk it. I had had my own misgivings about this same issue the week before and hence, had done extensive research in this regard–even so far as to look at the information pages provided by the manufacturer’s of PORPs. In spite of our ENT’s reassurances, I still feared the slightest shift of the PORP towards the inner ear–it could do loads of damage. The lab technician clearly was against going ahead with the MRI and told us he could have us talk to the CT scan technician about our concerns over radiation. It was still an hour until our back-up CT was scheduled (at 9:30 am) and so we agreed. We were shuttled into the CT scan room and she put Josh up on the CT machine, giving him a sticker to add to the inside of it. He seemed totally comfortable and I realized the CT technician had been told to just go ahead with the CT. In a way, it felt like the MRI technician had made the decision for us and I might have been irked, but instead felt relief. The CT tech told us that she was very certain she could quickly get the kind of picture of the temporal lobes that our ENT needed. And so, we just went ahead with the CT and, 30 seconds later, it was all over and we were leaving the hospital.

I have to admit, as easy as it was, it was a bit of a “let down.” After all of those months of research and worry, we ended up allowing Josh the radiation hit by having the originally ordered CT scan. Hence, the admittedly overused T.S. Eliot quote above. The upside of the CT scan was that it wasn’t at all scary or emotionally damaging for Josh. In the end, maybe that’s what most mattered. At least, that’s what I am going to believe because, at this point, there is nothing I can do about the radiation hit of this second of Josh’s CT scans. It is done.

We met with Josh’s ENT the following day to go over the results. It was a long 24 hours to wait for the results, but at least Chris and I didn’t have to go over to the clinic dressed like PE instructors. After an even longer half-hour wait for our ENT in the examining room, he came in and asked why we didn’t get an MRI. I explained to him the radiologist’s concerns. He said that those concerns were ridiculous, but he still looked it up on Wikipedia of all things. Wikipedia! He told us the next time he’d send us to a different hospital for an MRI. Thankfully, however, he got what he needed from the CT and, at least for the foreseeable future, there is no need for an MRI.

Our ENT showed us that both of Josh’s middle ears were completely filled with fluid and so was his left sinus cavity. What should have been all black (showing air) was all gray on the scan. He is hopeful that the fluid is the cause of Josh’s present decline in hearing. He also did not see any evidence of cholesteatoma. I take some comfort knowing that CT scans tend to provide more false positives (and MRI’s more false negatives) for cholesteatoma. At present, Josh is on a 20-day course of oral antibiotics to see if this will clear the fluid. We have another hearing test set for early June. I am hoping that the antibiotics clear the fluid. Josh has never been on oral antibiotics before, although he did have one full-spectrum antibiotic given intravenously in the ER when he was 2.5. I am not a huge fan of antibiotics for many reasons (hopefully a subject of a future post) but I do recognize that antibiotics still sometimes are necessary. If the antibiotics don’t work to clear the fluid, we’d be looking at PE tubes once again. I am very dubious of PE tubes, given that Josh’s ear canals are so small that our previous ENT never actually successfully placed the PE tube in his left ear and the right grommet, although successfully placed, ended up ruining Josh’s original ear drum. I would have a hard time accepting the potential destruction of Josh’s rebuilt right eardrum with another metal grommet. But we are not there yet. For now, “just antibiotics” beats surgery any day.

I am grateful. I am hopeful.

 

My son Josh had PE tubes placed at 5.5 months. He had never had an ear infection at the time but the tubes were inserted during surgery because his ABR showed a 45 decibel loss (mild-moderate reverse slope conductive loss) in both ears. It was believed at the time to simply be fluid behind his ears and before any scans of the ears were done, he had the ear tubes placed. The tubes didn’t increase his hearing capabilities. In fact, when he was two, we switched ENTs and our new ENT told us that the left tube had never actually made it into his eardrum. Because Josh has abnormally small ear canals, the smallest, metal grommets were used and the right grommet left a permanent perforation in Josh’s eardrum that was fixed at age 2.5 with a tympanoplasty.

If I could go back and do it all again, I would request an MRI or CT scan BEFORE the tubes were placed. Perhaps then we would have avoided the tubes–at least it was a possibility. Now, we are being told that Josh has fluid in the middle ear again, diagnosed by a CT. He is on a lengthy course of antibiotics, but if that doesn’t clear the fluid, tubes will be recommended again. I am loathe to have another go at tubes. I will very seriously weigh this decision this time. To that end, here is a NY Times article I found discussing the necessity and utility of PE tubes:

Are Ear Tubes Always the Best Approach?

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