Buildup and Background
A small bit of background before I get into the meat and potatoes as they are- I'm a nearly 2 decade military wife, with three kids- Bug, Tiny, & Bubba. I had two of my three kids (Tiny and Bubba) while my husband was on two of the three deployments we've experienced. My last birth was medically complicated and required a good deal of intervention to keep me alive after Bubba was born. My middle child, Tiny, we found out at 18 months was deaf in both ears, she received cochlear implants at two and a half, and was diagnosed with ASD at five. She is only partially verbal and communicates the most enthusiastically in ASL and leaves us in pretty constant mystery. All that to say- I'm not completely unacquainted with trials, with doing hard things, with taking care of my kids while my husband is away, to the ever new and crazy things that can be thrown in our journey through life.
Two years ago, my husband, Josh, was two months into an eight month training sixteen hundred miles away for the military. I was juggling home life, kids activities, house nonsense, school, and life in general. It wasn't the first time, and I'm still fairly certain it won't be the last time life will look like this for our family.
Just before Josh was set to leave, Bug started complaining or neck and shoulder pain. As she's a generally pretty high strung kid, we attributed it to stress and anxiety about her dad leaving, and sleeping irregularly(She pretzels up her body in her sleep, it's been pretty crazy to witness from the time she was little). I started helping her learn how to swallow pills so she could take Tylenol or ibuprofen a bit easier, and because she'd turned fourteen two days before her dad left and I figured it was a pretty good time to give it a shot.This girl also abhors going to a doctor. It is the last thing she wants to do, ever. So I kept trying things at home. Pain medication, rubbing her shoulders, helping her stretch, hot pads, muscle creams. None of it seemed to really help.
Cut to a month later and she still is in pain to the point she's propping herself up in bed at night to sleep because it feels better. I finally put my foot down and made an appointment at our doctors office with one of their new female PA's since she honestly hadn't gone in for a visit in at least two years and didn't want to see a doctor, let alone a man as a teenage girl.
We went in, the PA was amazing and really listened to her, she didn't push her. She recommend trying some massage therapy and yoga, and if those didn't work, we'd get some scans and do some tests. It took almost two weeks to get in for a massage. Around and during all this time she came down with a cold- it had been going around- that had a terrible cough attached to it and it just kept lingering.
The massage gave Bug some relief but within twenty-four hours she was back to pain, so her doctor sent us to we scheduled a tele-health appointment where we mentioned the pain and the lingering cough and we got x-ray orders as she suspected it might be scoliosis or some kind of bone or muscle issue.
So we went for the x-rays and when we had a follow up tele-health call I mentioned her cough and discomfort. The PA let us know her x-rays showed a minor scoliosis that could be corrected with some physical therapy. She also looked at the x-rays and said they weren't the angles they usually take to diagnose pneumonia but that there was a mention about something on the lungs and she suspected walking pneumonia since she did have some of the other accompanying symptoms and so she got put on an anti-biotic three days before the Easter holiday and her spring break.
She wasn't thrilled, but at least she'd had practice with swallowing pills, so it wasn't as hard as it could have been. She just didn't want to feel like junk anymore, but also didn't want us to cancel our spring break trip to her Grandma's house.
I noticed on about the third day of her taking the five days of meds that she looked a little puffy and she slept most of the day. I figured it was still from sleeping propped up and hopefully the sickness making its way out of her body. I noticed puffiness as I sat next to her in church the next day before we traveled to her grandma's. She still wasn't feeling great, but we were hopeful.
We got there, she was laughing and joking with her cousins and we were all taking a breath from the last two months of adjustments with their dad gone and all that was going on. We were all ready to just relax.
That wasn't what was in store for us though, and it was just a precursor to what was coming.
At about six-thirty the next morning, Bug came and woke me up. She is not a morning person and neither am I and she was hesitant to wake me up (I am grouchy but I've always told my kids to wake me up, even if I grumble :|). When she did, it took me a minute in the dark to see how distressed she was. She told me she couldn't breath and I flipped on a light and her face and neck were swollen.
During her dad's second deployment, we found out she's a kid that gets stress induced hives, and has a minor allergy to grass, but having had to take her in for an epi shot during that time I knew they would say to get Benadryl in her as fast as possible and then watch and give it roughly thirty minutes and take her in to ER if it gets worse or doesn't change in that time.
So meds in, pictures taken to track her progress and I started watching the clock. Nothing was changing and after twenty minutes I packed her into the car to go to the local ER.
Her blood pressure was too high(I knew a lot about this after what I went through having her little brother) and I mentioned it but it was waved off. The whole visit was a wreck. The doctor barely touched her, not even really looking at the "normal" things I'm used to with a check- listening to the heart, looking in the eyes/nose/throat, all skipped. She put her hands on her neck just a little. They ran zero tests- besides a strep test because it was "going around their town" that we had been in for all of twelve hours. We were told to keep her on Benadryl and get her on an antacid. None of it made sense. I asked the nurse- who helpfully said that because she hadn't had a sever reaction to the medicine right away it was a slow build up and she should be fine. The antacids would help get the bonded reaction out of her stomach and help the reaction stop.
I wasn't fully convinced, but they discharged us and we went back to her grandmother's house. Keeping her on Benadryl left her lethargic and sleeping most of the day away, and she was still swollen.
Wednesday morning, some of the swelling was down, but she showed me that she had found a "marble" in her neck. I looked and it was more like a steely size and just kept telling myself to stay calm. I didn't want to go back to the ER so I took her into the local walk-in clinic to a doctor my best friend had had amazing experience with for her and her kids.
That experience at least included hands being put on my kid as we talked over everything that had been going on. The doctor we saw had previously worked at Primary Children's hospital. He told me he was concerned about the lump, surprised they hadn't put her on a steroid to help kick out the reaction to the meds, as well as possibly helping to clear out infection still draining form the likely pneumonia she'd been diagnosed with. He also didn't run tests, but told us if the steroids didn't kick it to get back into our home physician and get more tests and scans done.
I was stressed, but the steroids seemed to perk her up and she didn't want to go home early from our vacation, so I just watched her like a hawk and tried not to let her over do it.
We got back and Monday she had her initial physical therapy appointment to get her checked out and start her first exercises for the scoliosis correction.
I've been through physical therapy for a few things so I started to pick up that the doctor was... concerned? I'm not sure that's the right word, but I do know that it isn't usual for a physical therapist to recommend you to get blood work done if her pain doesn't get better after a few sessions.
All of these breadcrumbs and comments, on top of my mom instincts of the last month plus, still couldn't prepare me for what was to come.
Even with all the times I've experienced being a statistic, you're never really prepared to be one.
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