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I don’t usually get heavy on the blog… I avoid sharing stories that will embarrass my kids, or have too much personal detail about them (stranger danger, y’all) but I have to share this story so that even if one other mom remembers this, it’s worth it.
My daughter is in the hospital. I couldn’t write that until she was ok. Until we were almost released. I couldn’t share unless I had good news to add. Almost as if typing it or sharing it would jinx us, or make it too real.
You have probably heard the advice “trust your gut” – as a mom, you’re supposed to have a special intuition, a feeling, about what’s best for your kid. Except often times, you don’t. Or at least, I don’t. There’s so much information out there are so many opinions that it’s hard to let your gut guide you. Honestly, I don’t live based on my intuition all the time – I like to think it’s a healthy mix between a feeling and some good ol’ fashioned research and logic.
Here’s my story about trusting your mom gut – and I think it may have saved my girl’s life:
On Christmas morning, my 4-year-old daughter woke up with a high fever and complaining her ear hurt. So much so that she didn’t open a single gift, not a stocking, nothing. She didn’t even care that Santa had come and he had eaten the cookies or there was a literally a roller coaster in her living room. Nothing. That’s when you know a kid is sick. We got her in to her Pediatrician (whom I love and trust completely) the next day, who confirmed she had an ear infection and started her on Augmentin, totally standard antibiotic. She still wasn’t feeling better by Wednesday – spiking high fevers and just feeling generally yucky and super uncomfortable. The Ped ordered a chest x-ray to rule out pneumonia – results were negative. When girlfriend was still feeling bad on Thursday, I took her back to the office. The Ped checked out her ear and said it looked clear but prescribed her a different antibiotic to treat whatever else was going on.
That evening, my husband gave Q a shower and noticed that the back of her ear was red, puffy and tender. Thankfully, he mentioned it to me. I am not usually a Google-mom, I’m not super alarmist, and I’m generally optimistic about my kids’ health because I have no reason not to be. But I Googled it: “ear infection with redness behind ear”. The second I read the result I knew it’s what she had: mastoiditis.
The “what ifs” and “coulds” are pretty bad: could turn into meningitis, could cause an abscess in the brain, could cause an embolism, could cause permanent hearing loss.
She woke up on Friday morning feeling better than she had in days; low grade fever, joking and playing more. But something told me – my mom gut – that I needed to get her in to the doctor, that day, before the holiday weekend. I called the pediatrician ready to feel like an idiot; of course she couldn’t have mastoiditis, it’s so rare! Literally a 0.004% chance… Diagnoses from the internet are never right. Right? My pediatrician got me in right away. I called my mother-in-law before I left the house to meet me at the doctor’s office because I had a feeling she would need to take my little guy from the office because we wouldn’t be heading home. Mom gut.
The doctor took one look at the back of her ear and confirmed my suspicion: mastoiditis. She called the Pediatric ENT at the hospital down the street and he told us to come right away, no eating or drinking for my girl, and to head straight to the ER. Friday is kind of a blur – ER, CT scan to confirm the mastoid bone had fluid in it, meeting with the surgeon and then sending our girl into the OR 20 minutes later. Holding my breath in the surgery waiting area with dozens of other anxious parents, kids and loved ones, staring at an electronic board and waiting for the status to change to “surgery complete”. Seeing her after surgery on her way to the MRI, lifeless under the sedation. Waiting more for the MRI to be done and meeting her groggy little body in recovery to wait her her to wake up.
The surgeon inserted a tube into her middle ear, a super common procedure for kids with frequent ear infections to allow for better drainage. He also performed a mastoidectomy, where he created a hole through which the infected fluid could drain from the mastoid bone. My gal has stitches and a puffy ear, but both will fade in the coming weeks.
We’re still in the hospital because the protocol is 7 days of IV antibiotics – strong ones – after a bacterial infection that affects the bone like she had. Her mastoid bone was deteriorating and the infection was heading deeper towards her brain; it simply had nowhere else to go and no way to drain. The surgeon told us he does 2-3 of these surgeries each year and remembers each one because they are so rare.
Since the surgery, there’s been no fever, her markers of infection (inflammation and white blood cell count) have decreased, and her overall demeanor is back to normal. I’m so thankful I trusted myself, my intuition, my mom gut and made the call that morning instead of waiting it out at the risk of sounding overbearing or crazy. The what ifs are too scary to think about.
So just know that YOU are the one who knows your child best; if you feel like they aren’t right or aren’t getting well, don’t be afraid to call your doctor or speak up. Don’t worry about sounding crazy. You are your child’s best advocate.
henry says
Glad you trusted your gut instead of the doctor- I agree it probably saved your daughters life! Unfortunately I have rather a lot of similar stories where doctors failed to pick up on what was wrong with my family members (myself included once!), and we accurately diagnosed it from google (surely not possible, right? wrong. It is!)… one example I can give is where I was so unwell & disorientated I couldn’t so anything and spent several months in bed- in the end it was so bad I couldn’t walk to the bathroom to use the toilet. During this time, my doctor called me a “hypochondriac”, refused to do a blood test and angrily demanded I left his office on more than one occasion. In the end I begged my mother to go in to the doctor’s with me- took some persuading as she had to travel several hundred miles to do so! It must have looked quite odd to have her with me (a grown man), but I was so disorientated I couldn’t trust myself to even remember why I was there let alone stand up to the doctor again.
Google research clearly indicated something wrong in the blood…e.g. low iron levels.
Once in his office, he told me to go away yet again, told me to “stop self-diagnosing on google” & refused to give me a blood test. I was walking out and my gut instinct kicked in, I turned around and refused to leave until he gave me a blood test for everything related to tiredness and disorientation (including iron etc.). Be begrudgingly agreed, but making his angry attitude abundantly clear.
Less than an hour after the blood test results were in, he called me from his personal mobile phone & sheepishly asked me to go into the office immediately as my iron & folate were “quite low”. He sounded extremely nervous on the phone & urged me to go in immediately, which was unusual as it normally took a huge effort to persuade him to see me and the wait was usually over 2 weeks for an appointment or even a phone call appointment.
After I picked up the iron & folate supplements (which were apparently the strongest on offer), the assistant told me they were panicking in the surgery as these were the lowest levels they had ever seen & they were surprised I was able to walk. I politely explained to her “I BARELY CAN!! I’ve wet myself on numerous occasions as I couldn’t make it to the bathroom & I forget who / where I am on and off throughout the day”.
The doctor looked on very pathetically & sheepish expression on his face, but offered no apology.
I changed surgery after that experience but unfortunately have heard many similar stories from family members and friends all around the country.
The problem is that health professionals see people so often that they lose perspective. Probably many customers are hypochondriacs, but that doesn’t mean doctors should automatically assume everyone is- that’s putting people like myself in serious danger.
I believe wouldn’t be alive today had I not pushed for that test, which was as a result of google.
The doctor never lost his job, never apologized, and I heard that he retired several years later with a hefty pension living in a very wealthy, comfortable area.
Becky says
Hello! Just wanted to say that my daughter was just hospitalized w mastoiditis and your blog was one of resources I found alongside all of the formal medical advice. It definitely was an encouraging factor in immediately going to the ER and ignoring the ped’s advice to take oral antibiotics and wait another day. Luckily it was early enough to not need surgery and fingers crossed that a couple days of IV antibiotics will be enough. Thanks for sharing!