Flu 2018: How it Progressed

Embracing winter mind is all well and good until the smallest member of your household contracts the very bad, horrible, no good, really quite awful flu of 2018. Here’s how it progressed (to date):

  1. Sunday (2/4)–Flu came on suddenly with sore throat, chills, extreme fatigue, lack of appetite and low grade fever.
  2. Monday (2/5)–Fever climbed from 101 degrees to 104.2 later in the day. My child, who never naps, slept almost all day. No appetite whatsoever. Difficult to get fluids in him but I roused him periodically for sips of water. Still, I saw his lips getting dry. As the fever crested over the 104 point, I finally gave him Tylenol. This child has a mild clotting disorder (in addition to bilateral hearing loss and asthma), so Ibuprofen is not an option. In general, I let fevers run their course, but above 104 (and climbing), I was ready to move into action with a fever reducer. Tylenol brought the fever down to about 102 within two hours. With his sleeping schedule so off and feeling better on fever reducer, he was up for a few hours in the middle of the night. He urinated two times this day. Very dizzy. Needed help walking to bathroom.
  3. Tuesday (2/6)–Wakes feeling a little better. Fever hovers around 101 to 102 all day without fever reducer. At 8:10 am, while lying down, a nose bleed starts. Nose bleeds are difficult given his clotting disorder (not hemophilia). It took one hour to quell bleeding. Two times in the two hours thereafter, the clot was disrupted and we had more bleeding, but both were resolved in 20-30 minutes. This took us up to about 11 am. Slept most of afternoon. Woke up with fever down to 100 degrees. Yay. My husband came home from work early to spell me. Yay. And was here in time to witness and clean up the vomit of mostly blood and water. Child spends evening panicked about throwing up again. 3rd day with virtually no food.
  4. Wednesday (2/7)–Sleeps in as possibility of school is still out. Nose bleeds starts almost immediately upon waking. Bright red blood all over our light colored, eco-friendly wool carpet. My husband had only just pulled out of driveway. Called him back to deal with nosebleed while I scrubbed all of the blood spots on the carpet with mineral water (very very useful in getting out blood stains). Fever down to 99.0. Mostly a better day with some appetite returning. Cough begins late in day. Because my son has asthma, we started him using his nebulizer. Anxiety about potential of returning to school the following day (yes, this child also suffers from anxiety) and so he was very late falling to sleep. Peaceful sleep, however, once sleep comes.
  5. Thursday (2/8)–at least so far. Wakes up late. I let him sleep in (for him, this is 7:45 or 8). Wakes up with quite a cough. No fever. Use nebulizer. Almost normal appetite. No nose bleed. Yay! Epsom salt bath in warmest water he can tolerate to help start clearing toxins out and loosen lungs.
  6. Friday (2/9)–Cough begins and lasts about one week
  7. Thursday (2/15)–Josh comes home with plugged right ear (surgery ear) and cannot hear out of that ear.
  8. Tuesday (2/20)–See ENT. Ear looks fine from outside. She wants to order MRI if his hearing doesn’t return in a week or so.
  9. Monday (2/26)–Ear begins to clear up.
  10. Monday (3/3)–decent enough hearing test. No MRI ordered.

 

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I’ve been very mindful this week that my Great Aunt Teresa died 100 years ago, of the 1918 flu epidemic. I’m grateful for life, mine and my lovelies.

 

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January 2016: Gratitude

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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Coming out of Poetry to Talk About Cholesteatoma

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.

Again

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
at normal?

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
again
again
again

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
is highlighted
again
again
again

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,
again.

Heidi Fettig Parton

*More information on cholesteatoma.

Nostalgic Over Nostalgia; CT Over MRI

[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.

 

Are Ear Tubes Always the Best Approach?

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?

Embrace the Maximally Postponed Decision

From Chalk Board in Daughter's Dorm Room
From Chalk Board in Daughter’s Dorm Room

“Embrace the maximally postponed decision” is a philosophy I’ve embraced ever since I read about it in a book about trying to buy/build a 1000 square foot house for under 100,000 dollars. As an aside, since my twenties, I’ve been intrigued by the concept of living in a very small, but well-built house. I still plan on embracing the small-house movement, but it continues to remain not appropriate for the number of people that I have floating in and out of my life. Fortunately, Chris shares my fascination and maybe someday, we’ll live in an airstream.

Anyway, back to the decision. Ever since Josh’s right ear (situs of Tympanoplasty and Ossiculopasty in May, 2012) started to drain late last year, and our ENT told us it was time to either have a CT scan or an MRI, I have engaged in extensive research, as well as entertained an internal dialogue, debating the pros and cons of each. Josh was originally scheduled for a CT scan in January, but I talked to our ENT and asked if we couldn’t  just “watch” for a few months to see what happens. He agreed. We were going to make a decision in March, but our ENT appointment was rescheduled twice and we didn’t end up seeing our ENT again until April 3rd. In the meantime, our ENT seemed to have changed his own view on the matter, now favoring a newer type of MRI to look for cholesteatoma in Josh’s right ear over a CT scan. At the same time, our new pediatrician called the radiology department for me and concluded that a CT scan (it would be Josh’s 2nd CT), even with the high radiation, would be better for Josh than trying an awake (without sedation) MRI for Josh. In all truth, I think I was hoping that somehow neither would be necessary, if we postponed the decision long enough.

To monitor Josh’s ear, we’ve been seeing our audiologist every six weeks throughout this time and, unfortunately, from February 9 to April 17, she’s noted a 15 decibel loss across the frequencies for Josh (so he is now at 30 decibels–but likely still falling) This is a very significant loss and it’s definitely hurt him at school. In particular, he cannot understand the kids on the playground and he always feels left out (his words for this are “no one tells me what they are playing anymore”–very typical situation for Hard of Hearing kiddos). Josh has had more than his fair share of tears over the past month that I believe have their origin in the social isolation he is feeling (also, I think he is grieving this loss, without really understanding what is happening). In the meantime, the hearing loss in Josh’s left ear has been getting progressively worse and we thought it was supposed to remain stable because it is conductive loss. Needless to say, we would be aiding Josh in the right ear again if it were possible but there is too much drainage for an aid right now. On April 3rd, our ENT and I agreed to first try Josh with an awake MRI to see if he could handle it. Most people I’ve talked to since have told me they don’t believe a four year old could handle an awake MRI. The thing with Josh is that he is super amazing about some medical procedures but has a terrible time with others. For instance, he’ll sit perfectly still to get his ears cleaned out under a microscope, even with a vacuum suction, but he freaked out completely when given his sweat test for cystic fibrosis earlier this year (and we were told by the lab tech that it would be painless).

With our MRI scheduled for April 28th, I continued to debate whether I shouldn’t just change over to a CT scan to avoid all of the anxiety the MRI might entail. I’ve been working through Mark Nepo’s The Book of Awakening this year. I happened across a daily entry this past week that had to do with making a major decision. Nepo says that if you are having trouble making a decision, look what is under that decision. Yep. I did this and realized that I am trying to make the perfect decision in this case because I feel like I so failed Josh in a medical decision two years back (see this blog entry for further details). Because of this decision, I think I’ve decided that going forward, I owe Josh the most well-researched, well-reasoned decision. Always.

As the debate waged on in my head, something happened. On Wednesday, Josh told Chris he heard a “whooshing” sound (he described it sort of like a whirring fan or static on a radio) in his right (surgery) ear. It was really bothering him to the point that he was hitting his ear. While the ENT’s office was about to close for the day, I miraculously got a hold of our ENT’s head nurse (I think I’ve learned to work the system a little bit). She told me nothing could be done but to have our audiologist look in the ear the following day (J. had an appointment already scheduled) and call to tell them what our audiologist saw. She also suggested trying to move up the MRI. Thankfully, the whooshing noise stopped before Josh went to bed that night.

The next morning, I got on the phone with radiology and they moved up Josh’s MRI for Monday, April 21st at 8 am. Since time is of the essence here, it was decided to also schedule a CT scan for 9:30 am, in case the MRI without sedation doesn’t work for Josh (it would take a week or two longer to get a sedated MRI scheduled). So, there you have it. Done. The decision will really be made for us by how Josh does on Monday morning.

When our audiologist looked in Josh’s ear with her otoscope she was pretty sure she was seeing his entire middle ear; meaning perhaps a total failure of the tympanoplasty (reconstructed ear drum–where did you go?). She let me have a look and yes, I am seeing a completely different ear than I was a few months back too. I am not sure if the tympanoplasty “blew” last week when Josh heard the whooshing noise. I called our ENT’s office from our audiologist’s office and they put Josh on our ENT’s appointment for Tuesday the 22nd at 9 am. So we should be learning more soon. At this point, I recognize our desperate need for information as to what is going on in Josh’s ear and so I welcome whichever test works for Josh on Monday. It is a bit of a relief to know that one of these tests has to be done and the decision has all but essentially been removed from my plate. And all that wasted time spent worrying . . . although I do not regret the time spent researching this issue. Still, it is good to know that sometimes, the answers just come and no amount of forcing will get us there sooner than we are supposed to arrive.

Sometimes the decision maximally postponed gets made for you. In a way, it is a weight off of my chest. Crazy as that sounds.

Josh at his sweat test in February (after the worst part of it)
Josh at his sweat test in February (after the worst part of it)