Do you know what happens when you get a seriously ill child?
All. Hell. Breaks. Loose.
Oh you had a schedule? Yeah, not anymore.
You have work/blogging to do? Not anymore.
Literally every second of every day they are down you are there. All the vomit, crying, lethargy, IV med bag changes, up all nighters, sleeping (more like cat napping) in odd places where you’ll be able to hear them and monitor their breathing. All of it.
It took us a total of five days to figure it out what was wrong with our 9 year old. We were very fortunate we didn’t end up with a different ending. The week prior she had a regular cold. Normal congestion, normal headache from the pressure. She missed school on Friday the 26th, simply because she needed rest. Otherwise she was fine. That changed damn near over night.
January 27th, 2018. If you’ve ever heard a true gut wrenching, agonizing, pain filled scream come from your child you’ll understand. If not, I hope you never have to hear one. Both Dad and I ran into her room. She had vomited everywhere, and was screaming/crying about her head. She had shivers so intense I had double check to make sure it wasn’t a seizure. Checked her temperature: 105.2. Got her mouth rinsed out, and gave her Tylenol. Got her in a tepid bath, but she was still shivering like someone with hypothermia. Rechecked her temp: 106.3. I took her to the ED where we waited 40 minutes to be triaged. When we finally were triaged, her fever had broken. The nurse advised that we didn’t have to stay if I thought it could wait til Monday. After all the flu is running rampant. 95% of the cases they’ve seen lately have been viral or the flu. I assessed my kid, she said “mom, I feel okay, can we go home?” So I took her home, assuming we probably caught a virus or the flu. Once the Tylenol wore off her fever returned, though not as high. We spent the next 24 hours alternating between wet washcloths on her head, Tylenol and ibuprofen. Her fever remained constant amidst it all, hovering between 102 – 103 F range.
Monday: I called the doctor bright and early and got her an appointment. That afternoon I took my kids to their appointments. The little caught sister’s cold. The older one was tested for both strains of the flu as well as strep. Everything came back negative. We were given a script for Tamiflu to be on the safe side and advised if she still had a fever on Tuesday to bring her in right away.
Tuesday: Kid felt great all day til late afternoon/early evening. She was so miserable that she begged me to go to the hospital. I didn’t take her, because I knew they would chalk it up to the flu. Every year about this time that’s what most everything is chalked up to. We rode out the night.
Wednesday: I called the pediatrician as soon as they opened and they got us in ASAP. (like an hour later). Went back to doc, kid finally had no fever again. Doc walks in does her exam, checks the chart. Kid had lost 4.5lbs in less than 48 hours. Severe dehydration was the only guarantee. Otherwise there were suspicions, but nothing spoken. One thing was certain, we were being direct admitted to the children’s hospital in our area. Her blood pressure was stable, so we were able to transport her ourselves. We had family come grab the little while we focused on the older child being admitted.
It was a whirlwind. We got to the room and were put into isolation. Multiple doctors and nurses were coming in and out, asking a million questions and poking and prodding at our baby girl. Next came the midline. Not even a regular peripheral iv. They were preparing her to stay for awhile. A team of three nurses lugged in this giant machine that lets them see the deeper veins, and they put this midline into her upper arm, gave her a bolus of fluids, and started her on a constant run of fluids while tests were being ordered. The attending came in and gave us possibilities, stated that they were starting with the worst diseases and working their way backwards. Up first: tumors, aneurysms, meningitis, and a few other horrific things I immediately blocked out. He said there was less than 10% chance it was meningitis, and an ever lower percentage for the other things mentioned. Within a matter of an hour our kid had four tests ordered that required her to be under anesthesia.
She was admitted at 12:30 and by 1700 she was down for her scans and tests. MRI with and without contrast, MRA, MRV, and a lumbar puncture. There were dozens of forms to sign, lots of hugs and kisses assuring her we would find answers, and one really miserable little girl who just didn’t want to be sick anymore. She came back up to her room at 2000. By 2200 we had a diagnosis.
The problem when they diagnose meningitis is they have no way to tell what kind you have at first. They have to wait for cultures to come back. That takes 48 hours. In the interim you are started on a hefty dose of IV antibiotics round the clock. If you have allergies, the medicine is changed but your options are limited. The doctor was fairly sure it was viral. He told us if it was bacterial, she would likely be dead already. Those are words no parent should ever have to hear.
A big positive was that all of her brain scans were normal. All of this sickness was caused by a combination of severe dehydration and meningitis.
I learned very quickly that meningitis is exceedingly rare. There are less than 200,000 cases of meningitis in the US a year (Mayo Clinic, 2018).
There are only two types: Bacterial and Viral. Bacterial is the worse of the two, and can easily lead to death. Viral still sucks, but is a lot easier to come back from, usually with no lasting side effects from the increased pressure on the brain.
We were in the hospital a total of three days (two nights). By Friday evening, the cultures showed zero growth, making the official diagnosis viral meningitis. After one last dose of antibiotic, we were permitted to come home on the condition we watched her carefully for a list of symptoms that felt like a mile long. Regular temperature checks, more sleepless nights, and lots more vomiting ensued.
We made sure she stayed hydrated and just gave the best supportive care we could. Still she was lethargic, and mainly slept. We quarantined ourselves inside, afraid to let anyone over in case they were to give her another cold or the flu or any other illness that runs rampant during this time of year. Monday (2/5) we tried to get her out of the house because we thought it might help. She ended up vomiting all over my car (filling a store sack as well), and just cried because it hurt to sit up. The trip didn’t last long. She came home and slept almost straight through until morning. She woke up, nibbled on some food, walked to the bathroom, laid back down, and went back to sleep.
Then something awesome happened. Tuesday morning she woke up without a headache. She had color in her face and was acting like her normal self. She continued this trend all day, even doing her make up work in anticipation of finally going back to school. We decided that if she continued to improve, then she could try to go for a half day on Wednesday after her follow up appointment.
Wednesday morning her pediatrician called bright and early to check on our kiddo. By this point she was doing wonderful. No headache, no vomiting, acting like herself. Doctor said if she was doing well I didn’t have to bring her into the office, but if symptoms returned or got worse she would immediately see her. We decided not to take her; no need to expose her fragile (but getting stronger) immune system to known sick people.
After 12 days (8.5 school days) our daughter was able to return to school. She’s been able to continue going on Thurs and today. Aside from just being tired she has been doing wonderful. Doctors told us it will take time for her to totally regain her strength, and we may see a few side effects (memory issues, etc) for a little while.
She’s excited to go back to dance next week. Her routine is slowly returning.
At the end of the all this craziness, we are so grateful that we still have our child, and that everyone worked tirelessly to quickly diagnose and treat her.
To everyone who sent positive and healing thoughts, to those who had gifts delivered to her room, and to those few who were able to come visit as she regained strength. Thank you.
You helped make a really dark time in our lives have just a few rays of sunshine. We can never express how much that means to us.
You don’t realize how much stops in your world when your kid becomes violently ill..
Until I knew she was on the full road to recovery, I just couldn’t bare to take my attention away from her for any longer than I had to. Mama Bear couldn’t leave her cub. Little cub was my assistant. She made sure her big sister got all the love and attention she needed.
Side note: we all were in isolation right along with our daughter. The chance of developing meningitis is extremely rare, and Dad, Mom, and little sister were already exposed to the virus in it’s most contagious stage. In other words, we were safe to be around her without a bunch of protection. Yes, even the little.