Tuesday, August 14, 2012

Does the worry ever stop?

This morning I woke up with a sense of deja vu.

Reagan has been what I call "running hot" for a few weeks now.  No doctor's office would consider it a fever.  She's warm.  She's 99.5-100.2ish most days.  Totally happy, totally fine, but warm.  Most moms I talk to think it's a teething thing.  She is DEFINITELY teething.  She's drooling like crazy and gnawing on everything she can get in her mouth.  But Madison never had any temperature fluctuations during teething, so I don't know what to expect from this.  I have no idea how long before I can expect the tooth to pop through (honestly, as long as she's OK, I'd rather she take her time.  I love her gummy smile!).

Anyway, the last couple of nights she's been a REALLY fussy nurser.  The outside of her ear was pretty red and she didn't like when Adam or I touched it.  We decided we'd call the doctor this morning and get her ears checked.  I wish I could have been a normal mom about it.  But instead, I kept thinking, "here we go again".  Because nineteen months ago, when Madison was around 6 months, is when a simple ear infection snowballed into months of worry and medical stress.  I've danced around that story in a couple of posts, so for those that are interested, here it is:  the reason a fever will never be "just a fever" for me.

** Warning...this might get long.  Feel free to skim.  I won't be offended!  Sadly, this is only the first half of our journey!  :-)  **

When Madison had her six month appointment in January 2011, we mentioned she'd been congested for a while, but hadn't been feverish.  Still, she was new to daycare, several kids in daycare had ear infections, and we were concerned.  The doctor she saw checked her out and assured us that she was totally fine.  It was winter, she was around other kids, she would probably be congested most of the winter.  She reminded us of the home remedies we could use.

Well, within a couple of days, her fever spiked.  I took a day off work, took her to the doctor, and unsurprisingly, she had her first ear infection.  We picked up that thick, pink amoxicillin and started it that night.  Within a few hours she was fine again.  She took the medicine for 10 days.

On day ELEVEN, her fever came back.  Back we went.  The doctor who saw her that day told us she couldn't tell if it was a new infection, or that the old one hadn't completely healed, but her ears were not great.  She told us amox was a great first line of defense, but it didn't always kill the entire infection.  They use it initially because it's mild on the stomach and tastes good, and they like to save the "big guns" for when they need them.  She gave us a stronger antibiotic, warned us to make sure the pharmacy added a flavor, suggested we give her probiotics and yogurt, and sent us away without concern.  Madison took that for ten days.  Despite the AWFUL taste, despite the added flavoring, she didn't complain.

On day ELEVEN...back to a fever.  We were given a THIRD antibiotic.  Adam was with me for this appointment and requested an ENT referral, saying we would just be back again in ten days.  The PA we saw that day clearly thought we were panicky first time parents.  She told us she was sure that last antibiotic would work.  They still weren't sure if it was different infections or the first one lingering.

This time we were back before the days were up.  Naturally, her fever spiked up on a weekend.  This time, we not only got a new antibiotic, we got the referral.  I called the ENT on Monday, and thankfully, they were able to fit us in Wednesday.  We were going to see the APRN, but that was just fine with us.

Lisa looked at her and took her history, all the while telling us that ENTs try to avoid doing tubes in kids under one year, especially during cold season.  If they can get through that first "sick" season, a good amount of kids grow out of it without surgery.  She was suggesting a resistant bug, and that we might want to try a few days of injections at the office to knock it out.  She took one last look to finish up her exam and brushed the back of Madison's ear, and Madison screamed.  To her credit, she didn't panic, just told us she'd really prefer the ENT see her before we left.

The ENT came in, reiterating what Lisa had said.  Then he looked at her.  And brushed the back of her ear.  As she pulled away sobbing he looked at me and said "When did she last eat food, and when did she last nurse?".  He told Lisa to go to the front desk and book the first available OR.  We were doing tubes THAT day.  He explained that the infection had gotten into the honeycomb bone behind her ear, called the mastoid.  Once the infection was in there, it was really hard to get rid of.  Sometimes it even required removing the bone.  Looking at the panic on my face he assured me we had probably caught it just in time.

The good thing is we didn't have time to think.  We took her home, waited for her stomach to empty, and brought her to the surgery center a couple of hours later.  In addition to putting the tubes in, he told us he'd be suctioning and draining the infection, in addition to putting antibiotic drops directly in her ear.  It was simple, and he promised we would have a different kid afterward.  The surgery was quick, her recovery room time was quick, and she was eating a yogurt at home by dinnertime.

She was fine the next day (which was good, since it was tough day on me).  Friday she went back to daycare.  When I picked her up, her babysitter told me she'd been off all day.  Warm, sleepy, clingy, didn't want to eat or drink.  No fever, so I didn't call her doctor on my way home.  I didn't want to be "that mom".

I should have been "that mom".

Her fever spiked up late that night, and we were back to her doctor Saturday morning.  This time, the doctor barely looked at her before looking at me and saying what I was so grateful to hear.  "We are missing something.  We aren't helping her.  I'm going to send you to the ER to run some more tests".  Her ears were so swollen and full they couldn't even see the tubes.

After a quick ER exam by the doctor and the ENT, a urine sample through a catheter, bloodwork, and a chest xray, she was admitted for IV antibiotics.  Her ear was awful (both ears actually, but one worse than the other).  The ENT resident told me we were probably looking at more surgery.  I rode the gurney up to the 7th floor with her on my lap.

Turns out the resident was overly zealous and surgery ended up not being necessary.  But she was still there getting antibiotics.  It was the saddest thing in the world, seeing her in her miniature hospital gown, with the sock taped over her IV (she kept pulling it out) in a sad metal crib with bars.  I stayed in her room with her, and we were truly held captive in the room.  Since they didn't know what was wrong with her, they had to assume she was both contagious and a risk to other babies and toddlers on the floor, and susceptible to the other illnesses on her floor that had brought those other kids in.  It was both annoying and terrifying.

There were multiple doctors coming in and out and every 6 hours they pushed another dose of medication through her IV.  I had to hold Madison down several times a day to get the infected fluid sucked out of her ears.  Until you have held a screaming, fighting baby down who is looking at you, wondering why you are participating in their torture, you can't understand the part of being a parent that rips your heart out.  She still panics when anyone comes anywhere close to her ears.

Finally her ears began to look better, but both the pediatricians on the floor and Madison's own doctor were concerned by something that came up in her bloodwork, specifically with her white cell break down.  The cells that fight bacteria were almost non-existent.  She couldn't leave until she met with a hematologist and they cleared her, and potentially ran more tests.

After four full days, she was finally released, with extensive follow up testing scheduled to monitor her blood.  That turned out to be the fundamental problem.  She was diagnosed with and treated for autoimmune neutropenia. In another post someday I'll tell THAT story.  But her ears were finally clear and healthy.  She went to the ENT every other day for two weeks to suction out any residual fluid and get checked.

So to sum up, ears make me nervous now.  Seeing how one ear infection can snowball into months of medication, treatment, surgery, in patient stays and worry has caused me to look at ANY sign of infection as the beginning of a saga.  Here's Reagan, just shy of 6 months, reminding me SO much of her sister it's scary, and crying when we touch her behind the ear.  Deja vu.

We saw her doctor today (luckily, they know Madison's history as well as anyone, and I'm totally justified in my status as the crazy mom).  After 10 agonizing minutes of clearing out excess ear wax (yes, I had to hold her down again, and while I was used to it, I hadn't missed it and it broke my heart just as much as it did with Madison the first time), she could finally see inside Reagan's ear.

No infection.  Chalked up to teething.

I wonder when I'll completely relax about fevers.  Not today, that's for sure.


Anonymous said...

You are 1) a great writer 2) An AMAZING MOM!!! It sucks you've had to go through so much, and that Madison has too! Always praying for y'all!
Glad that Reagan is okay!!!

Nat said...

Madison's story sounds so similar to mine, I have a primary immune deficiency and had maybe 15 sets of tubes in my ears from birth to 18. Is she okay now? I also don't make the antibodies, but for me it is a lifelong problem ( I am 32 now).

Meredith said...

Right now she's in a good place. She was started on a blood/bone marrow modifier that she responded well too. She was neutropenic with absolutely no neutrophils prior to treatment. We have a wonderful hematologist! I hope you are doing alright!

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