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.
you hold your breath; you hope it doesn’t happen again
you scramble for ground to stand on; everything’s turned grey
there is no one to guide you; but prayers are offered
was it just Thursday night when everything was so normal?
it was still the before and we laughed together on the couch
we had concert tickets for Friday night; had we finally arrived
3:50 am, Friday morning, the “Daddy” cry comes and it’s not
just another nightmare
fever, sore ear–same ear that endured five hour surgery to remove
cholesteatoma* five months earlier; he can’t hear out of ear
wait for 8:00 am; phone call blitz to appropriate doctors,
nurse practitioners; two trips to pharmacy; get antibiotics
so we can wait again out here in the land of not normal
later, the world is awash in grief for France, and so am I.
awash in grief for us all; the uncontrollable of life
waiting for love to conquer all; waiting for hope to
transplant the dread; we fall to sleep that night with our
boy tucked between us
feeling for his fever all night long, I don’t sleep
as you predicted; I want to keep him safe always
I want to know surgeries and terror strikes are done
I want to laugh with you on the couch,
Heidi Fettig Parton
Someday, perhaps, you’ll read this blog that I’ve been keeping since just before you were born; you may also one day question why I completed baby books for your older siblings and have not written one word in your baby book. From the blog, you’ll surmise that, during the first five years of your life, I was immersed in worry and fear. From the empty baby book pages, you’ll perhaps ask why I failed to celebrate your milestones.
Just one month ago you turned five. I won’t lie; getting to age five was a bit like pushing a stone up the mountain. When you were born, I had just one night ensconced in the dreamy future before learning of your failed newborn hearing screening. After many bouts of false hope, you were definitively diagnosed with mild to moderate reverse-sloped, bilateral, conductive hearing loss at ten months of age. Back then, I grieved for you and the extra challenges you would face in life. I had no idea whether you’d join us in the world of spoken language. I knew, of course, that if you didn’t ever speak our language, we would learn how to speak yours.
Thanks to early intervention and hearing aid technology, at age five, you are fully lingual: a highly verbal, extraordinarily intelligent little boy. Lately, I’ve been thinking that perhaps you hit the “jackpot” of disabilities. Indeed, it was only because of your hearing loss that you received extensive speech therapy early in life. When your observant speech and language pathologist noticed issues with tongue weakness, she referred you to an occupational therapist. The occupational therapist further recognized and diagnosed Sensory Processing Disorder in you. This diagnosis allowed early and robust therapy with a disability that may have remained “hidden” and hindered you even more than your hearing loss. Because of your hard work with this same occupational therapist, most of your sensory issues have lessoned: some have disappeared.
My joy in you at age five is immense. To see you going down a slide or riding your bike, for me, borders on the miraculous. To hear you say to me yesterday, in your cowboy duds, “Now I’m going to wander the Wild West” makes me smile. I love how your words provide us glimpses into your vibrant “imaginated” (a Joshy word) world. Challenges have abounded in your short life and I know more challenges will come. Still, I am enjoying the view from the top of this particular mountain. And I am experimenting with a softer grip for the journey ahead because you’ve already shown me just how good you are at climbing mountains.
I love you so,
- the way you can tell you’ve spent so much of your life smiling and laughing instead of frowning and scowling (because you have lines along the outside of your eyes instead of along the inside, by the bridge of your nose)
- the way you and E. discuss comic book-based movies, with such immense and dedicated passion
- the way you entered the life of my older two kids when we first started courting–you were so quiet about it; never demanding their loyalties, just slowly, over time, earning their respect and love by simply being the good, loving man you are
- the way you patiently wait as I shut down and go inside, all of my wounds that pre-date you making me so completely scared to trust this most wonderful love that has been placed into my hands
- that you and I can spend our fifth anniversary walking around Fleet Farms, wanting to buy survivalist gear but laughing together at how we’d both be so very incapable of using the gear if we ever needed to rely on it (not talking guns here folks think life straws and seed packages and turn-handle radios)
- the way you just smile (usually) when I drag home another cast off from the Goodwill or consignment store
- the way you occasionally raise your one eyebrow at me when I drag home another cast off from the Goodwill or a garage sale, because “they didn’t know what this harvest gold classroom chair from the 70s is really worth and I got it for $13.00!!”
- the way we can laugh together about things like you not remembering where we put our wind-up radio and me telling you that I remember telling you where I put it (and so you should know) but I don’t remember the location that I told you
- the way you say my birth month, JOO-ly
- because you watched me dance to Cortez the Killer and you recognized my soul out there on the dance floor
- the way you didn’t end the dialogue that began with my mixed tape (well, okay, a CD–but mixed tape sounds better)–and the dialogue continues to this day
- the way you color pictures (or do puzzles, or play Break the Ice) with our son each morning so that I can sit around with my tea and stare at the fire because you know I need a slow, gentle entry into the new day
- the love you have for your parents–when I saw how kind and respectful you were to your mother, I knew that I wanted to keep you
- the way we give each other permission to be bums on the weekends (I mean, we might have a cleaner house with a more pristine lawn if we weren’t so enabling of each other’s laziness–but I think it works better this way)
- how you bought me that plum-colored Carhartt coat on our anniversary date–most people do not realize that the 5th anniversary is the Carhartt anniversary (wood schmould)
- the way you can still show interest as you listen to me discuss the latest, greatest dietary means I’ve read about for treating all of my self-diagnosed conditions
- the way you pray for my complete recovery from all of my self-diagnosed conditions
- the way you defended my coat in that bar so long ago–I knew then that I wanted to keep you
- the way you spend so much of your weekends bringing our son to museums, libraries, and parks because you love it, because he loves it, and because you want to give me space to work on my book
- when you told me this morning that you were like your dad because his kids were his hobby and now your kids are all the hobby you need
- the way you eat/try my braised brussel sprouts, mashed cauliflower, steamed broccoli, and roasted cabbage even though you don’t like vegetables so much
- the way you always thank me when I buy you ice tea at the store (and I’m not even making it from scratch!)
- the way you gift me vintage station wagons on Pinterest
- the way you process hard news about our son’s health issues quickly and thoroughly and then bounce back into optimism the very next day
- while I am I am freaking out and running worst case scenarios at lightening speed, you calm, center and ground me
- the way you sign even the most mundane, household business text (i.e., new hot water heater on order) with 143, in this way always reminding me that you love me
Happy Birthday My Dearest Rhurac
Love Your Hysedai
Recently, I attended a writer’s workshop for the writing mom. I had no idea that since I began this blog back in 2009, so so many moms have begun blogging. And so many do it so well. Who am I? I ask myself this question from time to time. And then I fail to write a blog post. Instead, I tend to spend my time researching my children’s medical issues so that I can be one of those much maligned, as of late, “educated moms” who medical doctors have to contend with these days. I remember once hearing my daughter’s Irish Dance teacher say that her job would be fantastic if it weren’t for the parents. I suspect many pediatric doctors these days are feeling the same way. Internet research can be dangerous but it can also be extremely useful. And then, being able to tap into the collective wisdom of fellow blogging moms (and getting their support)–well, that is just a wonderful blessing of the internet.
So I am not sure why I had never run across this article before, but last week I found the quintessential article on tympanoplasty surgery and yes, cholesteatoma. It is written by an ENT, but written for a lay audience. And he really gets how to write for a lay audience as well. After reading the article, I cried and cried. Because I finally understood–fully understood–the decision we made for J when we opted for his tympanoplasty. I also understood the extreme and rare miracle of his hearing being restored through the surgery. And, well, I understood the implications of cholesteatoma oh so much better. Every day this blog is visited by people looking for more information on Tympanoplasty and for those of you here for that reason, here is the link to that magnificent article by James Fairley. “Dr. Fairley, I will likely never meet you but I am forever grateful for your contribution to my knowledge base in an area where I need the most knowledge possible to make the best decisions for my son going forward.”
And so we met with our ENT this past Monday. He walked into the office and looked at the piece of notebook paper in my hand. The paper, front and back, was filled with questions. Some of them “if” “than” type of questions and so I had to proceed in order. It was a busy day in the office, in spite of the 50 below wind chill temperature outside, and he was already behind by 45 minutes. Yet, still he sat down and got comfortable when he saw my list of questions.
I told him, “I have some questions for you.”
He replied, “I can see that.”
Well, I have to hand it to him. He listened to and answered all of my questions and every last one of my clarifications. We left his office with the understanding that he would follow J’s ear for the next few months and we would delay a CT or MRI until either we cannot put it off any longer or the drainage pattern gives our ENT a better sense that we are looking at cholesteatoma. He agreed to using an MRI but said that there is risk in sedation of kids at this age too. He said, “But you guys are the parents. I just present the options and you get to decide.” So over the next few months, I will conduct research to help us weigh CT vs. an MRI; another brutal dose of radiation or yet another sedation.
After making my way through our list of questions, I did apologize a little for the inquisition. Our ENT responded, “You are his parents. You have a right to be concerned and ask questions.” And then he added, “Of course, you two might be a little more concerned than most but that’s okay.” I said, “Hey, I know–it’s not healthy but I am working on it.” I didn’t tell him that this tympanoplasty surgery has driven me to attend Al-anon when I haven’t lived with an alcoholic now for 13 years.
Chris said he had kind of fallen back in love with our ENT after seeing how he handled my questions. And I guess I did too. It felt like a small triumph. We were able to cancel the CT and wait a bit. We will have an actual choice between a CT and an MRI. And, at this time, there is no concrete reason to believe J has cholesteatoma. Well, I’ll take it.
But as it so often goes with J, one triumph (small as it was), is followed by upset. J had some not good blood results come back from his pediatrician’s office and I got the call about those the day after J was at the ENTs office. And so, on another 45 below windchill day, I was rushing J off to the nearest Children’s Hospital for more blood tests. His blood draw from the week earlier had been nothing short of disastrous and so I had his OT calling to talk to the lab director to prep them for J as we were walking in from the parking garage. They did everything right for his SPD issues, but the best tech they had couldn’t get blood from J. She said his veins were jumping around. J was traumatized and screaming but we let another tech try because the other option was to try to walk him back into the hospital the next day and try again (ugh, I don’t think so). She got the blood. And now we are waiting.
As I drove home with J yesterday from the blood draw, he stared blankly out the window, even though I was playing his favorite CD. He seemed completely defeated by the experience. Hurt, actually. Yes, in the physical way but in a deep emotional way too. I know that there are children out there, particularly those with cancer (I am continually encouraged and amazed by the mom blog ourlittlehazlenut.blogspot.com) who have endured far far more medical procedures than J. Still, I started crying silently on the drive home as I thought about the large number of stickers (I am certain more than 500 now) J has received after medical procedures. Just that day, the lab tech had given J four stickers and a can of bubbles because she felt so bad. She told us she was very experienced and had never had a blood draw go so poorly. She told J she’d have given him an iPad of his own, if she had had one to give. She said, “He is just so sweet and he tried so hard.” Yes, so sweet. So sweet. I will continue to question and seek the best answers and do all I can for my sweet little boy. And when I get a free moment, I’ll try to blog about any learnings that might be shared and prove valuable to other moms.
It’s been a long while since I’ve written an ear update. At this point, I am sure our ENT would categorize J’s tympanoplasty as a success. Our ENT not only repaired J’s ear drum (well, more accurately, he rebuilt a new one with cartilage taken from behind J’s right ear), but he also discovered the physiological reason for J’s congenital conductive hearing loss. He found that J’s first two middle ear bones were abnormally small and therefore, could not strike his ear drum. And, in any event, the right ear drum had been destroyed by J’s previous ENT who insisted on inserting tubes into his ears even after discovering in surgery how abnormally small J’s ear canals were. I guess fortunately, she never really managed to get the left grommet into his left ear drum.
During the tympanoplasty, J’s ENT emerged from surgery, told us about the deformed ear bones, and asked us if we wanted him to remove the first two ear bones and insert a titanium prosthetic device (TORP) in their place. We went ahead with the procedure and it restored J’s hearing to within normal range. In consequence, J has been unaided in the right ear for the past 19.5 months. Although J’s language development was coming along nicely once fitted with hearing aids that actually worked for his small ear canals at 18 months of age and with the help of a Moog-method based school, J’s language exploded in new and exciting ways post surgery. A few months post-surgery, J no longer qualified for speech services and in our recent check-in with a SLP, J’s expressive language ranked somewhere in the 95 percentile for his age group. For all of this, I am so grateful.
J’s right ear, however, has continued to drain intermittently post surgery. We’ve spent more time at the ENT’s office post-surgery than I care to recount here. Unfortunately, in the past two months, the drainage has kicked up a notch. His ENT thought J had an ear infection a month back, but the culture did not grow anything. When we went in for our follow-up appointment yesterday, J’s ear had begun to drain again. Our ENT suggested it was time for a CT scan to check for a cyst. I said, “Do you mean cholesteatoma?” He answered, “yes.” Well, if you want to strike the fear of God into a mother, just use the word cholesteatoma in the same sentence with her child’s name. Especially if the mother has already been through the horrors of ear surgery once before with her child.
And, sigh, . . . I’ve been working so hard on my fear-o-meter with respect to J’s right ear. In fact, I have a large number of alcoholics in my life–mostly past life but still a pivotal family of origin member who remains actively using. Let’s just say that since childhood, I’ve had a way of collecting alcoholics in my life. Countless times throughout my life, people have recommended Al-anon for me. But I always thought that I could go it on my own. Finally, however, I started attending Al-anon this past fall. Mainly because I realized that my living in constant fear over J’s right ear was impacting my health. I needed to learn how to turn that which I cannot control over to my higher power. I am working the program but I have a feeling I’ll be attending Al-anon for the rest of my life. Alcoholism is the family disease that keeps on giving. Anyway, the word “cholesteatoma” puts my mama fear-o-meter right back into the center stage of my life. Cholesteatoma is a disease that can be dealt with, but there is never a guarantee that it won’t return. I asked our ENT if J’s ear surgery increased his risk for cholesteatoma and he answered, “yes.” And then, of course, I had to ask what percentage increase came from the TORP procedure and he told me, “about ten percent.”
Well, I must admit, I thought I had finally found the serenity to let go of my desperate clinging to J’s ear health. On December 5th, we visited his audiologist for testing of his right ear post-ear infection (that really wasn’t an infection). We learned that his hearing had remained stable (no drainage at time of testing)–of course when he is actively draining, he definitely loses some hearing capacity in the right ear. I talked with our audiologist (who is outside of our ENT’s office but we keep her because we love her so much) about J’s surgery and about how much hearing J will lose if the ENT has to remove the TORP (I wasn’t thinking about cholesteatoma at all at this point) due to the continued issues with drainage. Of course, it will be total conductive loss, which is about 55-65 dmb. When J still had his ear bones, it was about 35-40 dmb, with a reverse slope loss. His left ear still has all three ear bones, but was never quite as good as his right ear so about 40-45 dmb range of hearing. I talked about how I’d second guess our decision if he loses that much hearing in his right ear because we decided to remove the ear bones. And then, unexpectedly, she gave me a gift. She told me how she used to work as an audiologist in a clinic for kids who had lost hearing due to meningitis and she told me that even if they had had two years of natural hearing before meningitis took their hearing, it made speaking so much easier for them. She told me that this time we had given J of natural hearing (unilaterally) during his language formative years (0-5), was extremely valuable and probably weighed in favor of the surgery we had done. I left her office feeling lighter than I’d felt in 19 months. I left saying, “Okay, God (my name for my higher power). You know J’s every need far better than I ever could and I am going to stop taking this burden of worrying over this ear. I am going to stop second-guessing our decision. I am going to start being absolutely, joyfully, grateful that J is fully lingual at age 4 years, 3 months.
I had about ten days of this blissful state. And then, yesterday, I heard about the “ten percent increase for cholesteatoma.” J’s ENT also conclusively diagnosed J with a perforation in his right ear drum yesterday. And so today, it’s back to working my Al-anon program.
God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.
CT scan scheduled for January 15, 2014. And I am so worried about radiation exposure too.
In the meantime, I am hoping to relish this holiday season. E is already home from his first semester of college and got all A’s. H is coming home in 3 days. I am so excited for us all to be together and to cook for my family and to have us all under one roof. To me, there is no greater joy than having all of my kid’s together. I do not intend to “miss” this time by shouldering the heavy sack of ear worry that I’ve been carrying over the past 19 months.
God, you know J’s every need. You love J more than I ever could. You know far more about his ears and what he needs. I put his hearing, his ears, his health into your hands. I lay my burden down. I trust in you. If this is the proverbial thorn in my side (and I think it is), you’ve told me that the only remedy is grace. ‘Let my grace be sufficient for you; for J.”
Enough. There is always enough grace for ANY situation.
E and J eating at my favorite restaurant (given I am gluten free–and I suppose I need to begin to tell you all about my health journey this past year) before J’s ENT appointment. E held J on his lap while ENT cleaned out J’s ear under microscope. Such a loving big brother.