HOLEY EARBALLS (pt 1)

[for those who have asked, this is the scoop on hutt’s earballs. If you are not family and/or care nothing about an oddly specific, obnoxiously detailed medical history of my middle son’s middle ear, feel free to pass this post on by.]

About 18 months ago, at the beginning of the Winter Virus Season, our middle boy got an ear infection.

And then another one.

And then another one.

And on and on.

The infections clustered enough in a short enough amount of time that we were referred to a pediatric ENT to talk about putting in ear tubes.

Super simple procedure; very common in small kids.

So we did it.

The surgery was so fast, I was still arranging my purse and coat into the seat next to me in the waiting room when they called us back.

Parents of Hutton? He’s ready for you.
“…really? Because I literally just sat down. And I was about to have an intimate moment with that vending machine Reese’s cup. So…”

“He did great!” the doctor said. “We’ll see you back 6 weeks post-op to make sure everything is healing; otherwise, he’s good to go.”

……………………

We saw him less than 2 weeks later, because Hutton’s ears were already goopy and disgusting again. Diagnosis: ear infection #6.

And then 4 weeks later, at the originally scheduled follow up visit. Diagnosis: ear infection #7.

Screen Shot 2017-02-13 at 8.52.10 AM

It seems like most kids see their ENT’s exactly 3 times: once at the consultation, once at the surgery center, and once at the post-op visit.

Tubes go in, infections stop. Or so I hear.

Hutton’s continued. On and on and on.

We finally got him through last winter, had a 2-3 month infection reprieve, and then summer happened.

And over the summer, he got The Mega Infection.

The one that couldn’t be cleared after 4 rounds of antibiotics. The one where sewer slime oozed out of his ear for an entire month. The one where our pediatrician conferred with an infectious disease doctor about “what type of infection this could possibly be to be resisting all the medication”.

We ran cultures, we switched meds, we sighed heavily.

Finally, at some point, the infection was cleared.

Clearing it was a big enough deal, we threw an Ear Party to celebrate.

No more infection? EAR PANCAKES FOR ALL!

Screen Shot 2017-02-13 at 8.55.10 AM

But then we went to the ENT for a follow up to the follow up of the follow-up Follow Up.

We learned that during the course of The Mega Infection, the tubes and fallen out.

“The tubes have come out, and one ear looks great,” our ENT said. “The other eardrum, however, was ruptured. The perforation is slightly bigger than the tube was, so we’ll just monitor that until it closes up. In the meantime, keep that ear completely dry. (oh, and here’s an earplug. Trying to keep this in your 2 year old’s ear is a complete joke that will make you want to bang your head against a wall.) Good luck!”

earplug

Our next follow up appointment was 6 months later. By some miracle, we made it all 6 months without another infection.

We did, however, notice a change in hearing and language during those months.

And by “change”, I mean every other word that came out of Hutton’s mouth was “WHAT?” or “TALK YOUDER” or “TURN IT UP”.

Sure enough, the audiologist confirmed hearing loss at his follow up in December. Not severe, but certainly noticeable.

When the ENT examined him, he said, “Well, we have a few things going on. The first being that the hole in his ear drum has grown a little bit, which explains his hearing loss.”

me: “Grown? Is it supposed to do that?”
him: “Not really. It used to be maybe 40% of his eardrum; now it’s more like 50+%.”
me: “Haha! For a second I thought you said FIFTY percent. 5-0. Like, half his ear drum.”
him: “I did.”
me: “Oh. Um. And we aren’t sure why it’s grown? That seems like a large hole. Is that a large hole?”
him: “It is sizable.”
me: “Like how sizable?”
him: “Well, for reference, ear tubes are 2% of the ear drum.”
me: “And now he’s at 50+%? So…from 2%, to 40%, to 50%.”
him: “That is correct.”
me: “This seems like an issue.”
him: “Yes, it will have to be repaired at some point. Probably when he’s around 6. We’ll just keep it completely dry until then.”
me: “Mmmm. Yes. 3 more years of those cool, super effective ear plugs. No problem at all.”

So not only did the perforation grow substantially (?!), his left ear has significant amount of fluid on it – again – which explains why he can’t hear a dang thing.

Our ENT wanted to immediately jump back into another tube.

I, on the other hand, wanted to find the root cause of all the fluid so we didn’t…I don’t know….end up with, like, 2 broken eardrums that needed to stay dry.

He was uninterested in my hesitation.

I was uninterested in him and found a different ENT.

First things out of new guy’s mouth: “Wow, that’s a big hole. And his hearing is pretty terrible from the combination of the hole and the fluid build up, but before we jump to another tube, let’s try to address the underlying issue.”

s  l  o  w    c  l  a  p    for our new ENT. I love him s’much.

He thinks Hutton might still have reflux – an odd but reasonable assumption, seeing as Hutton has no other glaring food or environmental allergies and we’ve explored every other option – and even suggested we visit a pediatric gastroenterologist. (We did; it was unhelpful.)

To drain the fluid on Left Ear, we’ve tried:

  • a chiropractor who, as precious as she is, adjusted him a few times before saying, “I think the fluid is gone!” (It wasn’t. At all.)
  • allergy meds
  • reflux meds
  • snake oils
  • wishful thinking

…to no avail. Not only is the fluid not draining, it is perpetually infected.

So, tube #2 it is.

This week.

One tube and one adenoid(s?) removal.

Long, long, long story summarized: the holey eardrum will have to be completely reconstructed in the future, and the other ear will have to stay clear and fluid-free if he has any hope of hearing and speaking clearly and at a normal volume for the next few years. (Which, currently, DOES NOT HAPPEN EVERYTHING HE SAYS IS DISTORTED AND/OR AT AN ELEVATED VOLUME.)

(The excessive volume is kind of a funny trait until you go to the public library. Librarian #2 was wholly unimpressed with our presence the last Monday.)

When I tell this whole saga from the perspective of a year and a half in, it’s doesn’t feel like a big deal. Probably because it’s not, really. It’s kid stuff that we won’t even have to think about in a few short years.

Before now, though, it’s been exhausting.

We’d think we were in the clear, only to find a new complication. In the clear again, new complication. Repeat.

One infection, one appointment at a time.

Even though we know his overall health is fantastic, and even though we know he could be dealing with actual life-threatening issues, and even though we know this is a blip on the radar, the middle portion has been wearisome.

We’re very ready for Thursday. We’re praying his hearing improves dramatically, and we’re praying taking the adenoid tissue out will keep his ears free of infection.

We’re hoping Left Ear pulls its crap together so Right Ear can be the only high maintenance one.

Feel free to pray with us.

We’ll keep you posted.

And, to thank you in advance for your prayers, here is our main man reading the title of this blog.

4 thoughts on “HOLEY EARBALLS (pt 1)

  1. Morie Smith

    Hi, there! I’m an audiologist, so I’m pretty familiar with this whole process and I feel your pain! Recurrent infections, especially after tubes is the worst!! My question is… Have they talked to you about a custom ear plug(s)? They can make a custom silicone ear plug that is molded to his ear that comes in fun colors (like up to 3 swirled, with or without glitter!) that would give you a better seal, and letting him be involved in making it/ choosing colors, etc might make wearing plugs a little more fun/ bearable? They are easy to clean/sanitize, and hold up for years. It requires taking an impression of his ear with hardening material, so some audiologists are hesitant to do this with kiddos, especially with eardrum issues, but the audiologist with your ENT should be familiar/ comfortable with this process (I worked for an ENT for a while, and we did this fairly frequently). Not sure if this would help, but maybe something to consider! Hope you guys get some relief soon!! 🙂

     
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    1. Sarah Brooks Sarah Brooks

      I have not!! We just switched to this new ENT so I will have to ask him about it. Our other ENT gave us the fitted plug (not custom, but better than the squishy orange circus-peanut-candy kind). A custom plug could save our hineys over the summer.

      Thank you so much for the info!

      And, for the record, I didn’t love our old ENT but I was so sad to leave his audiologist. You guys are my fav. 🙂

       
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  2. beth

    Will pray for this little nugget! I had so many ear infections, they took my tonsils and adenoids out when I was 2 1/2 to preserve my hearing. Praying this procedure helps him! With teens now, SO missing the toddler speak phases! Would you please pray that snapchat gets wiped off the face of the earth?

     
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  3. Sarah Iverson

    oh man – i am all too familiar with this…. apparently i had 6 sets of tubes put in my ears by the time i was five and STILL get constant ear infections, even at age 30. so much so, i went to the walk-in clinic for some raving fevers and as they were checking me out they said “ummmm do your ears hurt at all?” “no…. but these fevers will be the death of me” “oh… because you have double ear infections.” hah. double ear infections and i had absolutely zero clue. so i guess i live with them often? the worst is when they rupture and my count is 14 times now between the two… rupture free for 5 years now though!! WOOP WOOP!!

    oh and i also can’t hear out of my left ear… like…. walking through the office talking to big important boss lady, frantically trying to take notes and i switch sides with her to put her on my right side midway through her sentence. it’s not weird. or how about i have NOOOOOO clue which directions noises come from. my cell phone rings in the house and a confirmed 10 out of 10 times, i go the exact opposite direction of said phone.

    don’t get me started on airplanes. my eyes water like a baby from the extreme pain… i’m not even crying, it is literally the only way my body knows how to respond to the pain. oh and remember how i was on 4 flights a week for 3 years? kill me now.

    all that to say… i TOTALLY get these awful ear things 🙁 and i am so sorry 🙁 and no amount of antibiotics works for me either. some helpful things i’ve picked up along the way…. feel free to take it or leave it as needed:

    1. if a doctor tries to prescribe an antibiotic that you KNOW won’t work and you tell them and they say “well let’s give it a try for three days and you can come back if you’re not feeling better” ….. F. That. Noise. Instead, tell this lovely soul that the antibiotic gives him the runs and they’ll move you to the next level, no question. (a friend of mine tried that…. definitely not me…. maybe…..)

    2. i’m sure your doctor has this under control, but they’ve used steriods to get my ruptures to close… i’m not sure what kind or if they help, but it hasn’t made it worse!

    3. wind and cold are KILLER on my ears… abilene was THE WORST and where all the ruptures started… so i always wear a hat in wind and cold… protect those ears!

    4. when i had ear infections as a kid, my mom would “play hairdresser” with me and wash my hair in the kitchen sink with the squirter deal to try and control water not getting into my ears. well played, mom. i loved it and thought it was such a treat

    5. as a kid, i was convinced that the “bubbles” in sprite cleared up my ear and somehow convinced my mom of the same. so i’m not sure if that actually works or if i was just scheming to drink some soda… but it def lifted my spirits!

    6. as an adult i’ve found if i can get myself to relax, the pressure in my ears finally relieves itself. that neck muscle that goes down from behind the ear to your collar bone is the spot… oof it gets sooooo tight. so i’ll put a hot pad there and try and loosen that up. now getting a 3 year old to relax?? i’m not exactly sure how that’s done… my mom used to tell me to “be a ragdoll” but eh… i don’t think it worked. now i tell myself to push my shoulders down and it seems to trick me into relaxing 🙂 sometimes 🙂

    7. i mentioned hot pads above, but also a hot washcloth. i lay the trouble ear down on the hot washcloth so the steam goes up into my ears (is that a thing?). Not at all scientific but tends to help relax and break up that gunk in there.

    8. be SO careful blowing the nose!! or trying to pop the ears for any reason!! it’s a thing people that don’t have ear problems can’t understand… but the idea of holding my nose and blowing to pop it (even as a 30 year old)…. well let’s just say, i’d stab myself in the eye 324032832502 times before i’d hold my nose to pop my ears. big yawns are good for relieving ear pressure – i would def do that before the hold your nose thing

    I feel for you guys! Ears = the worst. As far as “how to deal with a human that constant says ‘what'” or “how to deal with a person you love having the tv on a minimum volume setting of 32 when all others request no higher than 21” i direct you to my fiance who is the most patient/sweet/understanding man on the planet and loves me and my ear quirks and comforts me when i consider stabbing myself in the leg to distract me from ear pain. you guys are the best – hope some of these tricks are able to help you out! sending all my siggie love

     
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