A year ago, in a faraway land called St. Louis where there’s a population above 1,000 people and buildings that have more than 2 stories, we landed ourselves at Barnes-Jewish Hospital. I never imagined I would be here; in the back of an ambulance with a sick infant that was mine. How did we get here? What had I done wrong?
I thought that I would always be able to prevent really scary things from happening to my son; at the very least when he was very, very little. My medicine cabinet is stocked, we eat healthily, my house is relatively clean, I constantly keep an eye on him, he was exclusively breastfed, we have only loving people in our lives, but somehow it wasn’t enough (that feeling resonates through motherhood) and I found myself alone in the back of an ambulance calming my 10-month-old from a very, long, bumpy ride while he was attached to all the monitors.
The lead up to his hospitalization is like putting a puzzle together, but I still can’t find all the pieces. I have gone over it and over it and over it in my head. What caused this? How did I let this happen? Let me try it one more time.
Joe was on number 7? in 4 months, at this point, of ear infections. I had stayed home with him a day or two the week before because you can’t bring a sick kid to daycare and I hate leaving a sick baby anyway. Tug my arm, I’ll stay home and take care of my baby.
The ear infection that he had had that week was not getting better. He was still getting fevers, not eating, not sleeping, all the works. I called the doctor and he put Joe on a new medication. We started it that evening and he seemed ok in the morning, so to daycare he went.
I was able to pick him up early because my school was having a picnic and we were allowed to bring kids. I am not always the best mom and forgot to pack his hat, so he was outside with a towel tied around his head to prevent sunburn. He has always loved being outside, so I thought it would be fine for a little while. His grandma walked him around the pond and he got more sun than I think either of us realized.
We went home and had ourselves a normal, wonderfully boring evening. As a mom, there is absolutely nothing better than boring days where nothing goes wrong. But boring is not what got us to Barnes.
He woke up in the morning with spots all over his body. I had no idea what they were because I’m a new mom and duh, I don’t know shit. So, I sent a picture to a few of my friends and they suggested hand, foot, mouth or hives. I called into work for the 50,000th time that year and watched Joe’s hives grow astronomically. (The taking off work between Pat and I had become an almost daily argument because every other day we were having to stay home with him.)
I was terrified. I sent Joe’s doctor pictures and he tried to calm me down. He told me to give him Benadryl and Claritin and to stop the medicine we put him on, but also switched him to ANOTHER antibiotic because the kid still had a raging ear infection.
So, here I am walking around Walgreens, buying oatmeal baths, picking up another god damn medication for my hived out baby, losing my mind, staring down an aisle of pain relievers wondering if there was a magic potion that could fix failure. I was just losing at motherhood. This kid could not catch a break and the evidence was all over his body.
By evening, the hives weren’t clearing up and by morning they had spread to his eyes and I was hyperventilating while giving him his 5th oatmeal bath, his 4th round of Benadryl, his 3rd round of Claritin, his 2nd round of the 3rd antibiotic, and alternating Motrin and Tylenol. I felt so bad for the kid and was now worried that the hives might be in his throat.
I had ambulance sirens going off in my eyeballs. I rushed him to the emergency room and they didn’t even have me check in. They gave him a steroid and more Benadryl. THEN, we got the pleasure of meeting all the damn med students because Joe doesn’t disappoint, people. He had “the best case of hives this side of the Mississippi”. I had myself a winner, but I felt like a complete failure.
Bored, yet? This is just the beginning. We haven’t even gotten to Barnes and it’s 2 hours away. So, after the hives calmed down, we moseyed on home. I stayed home with him the rest of the week because my workplace is awesome and I was a stress mess.
Two days later, Joe was starting to have weird spasms after he ate. They looked like infantile spasms and if you look those up, well just don’t. But I did. And then I went and beat my head against a brick wall.
I took a video of them and sent them to his doctor who said to wait another day. We waited and the kid kept having the spasms. We were back in the emergency room within less than a week of being there for hives. Who hates hospitals? I’m pretty sure everyone. But at this point, I loathed them.
They looked Joe over at the hospital again and then decided to ship him to Barnes. It only took 5 hours for this assessment. Hard eye roll. It is hard to keep a 10-month-old occupied in a tiny, enclosed space for 5 hours.
Joe and I got into the ambulance around 9:30 pm and were at the BIG CITY hospital by midnight. I had the utmost pleasure of discussing which restaurant the driver would get to eat at after they dropped us off. Like are you fucking kidding me right now? I do not give two shits about the selection at Chili’s versus the home cooking at that BBQ spot you mentioned 80 times. My kid is being rushed to ANOTHER hospital. I haven’t slept in 2 weeks and did I mention there is something wrong with my 10-month-old BABY? Oh, ok. Chili’s it is then.
We were at Barnes for 2 nights and 3 days. Through the course of those nights and days, Joe had an EEG and an MRI done. No one slept. It was an excruciating 3 days. Watching your baby get wires glued to his head and then ripped out after being monitored like a rat, then the next day having him put under and have to LEAVE his side as my little squish was rolled down the hallway with strangers, was enough to drive a mother, bat shit, over the top, shoot for the moon, I don’t have any more nerves to lose, crazy. All I could do was cry and wait. So much waiting.
Diagnosis: myoclonus with a full serving of doubt. They weren’t sure what was going on with him. We were twiddling our thumbs, waiting for this life-altering diagnosis and the doctors seemed more clueless than we were. A team of 20 specialists who had listened to his story 30 times, seen my videos, done all the tests, monitored him for 3 days, were not sure what exactly was happening. BEST TRIP AND MONEY SPENT OF MY ENTIRE LIFE. Spring Break 2016 Children’s Ward Edition: Here’s how to lose all your hard earned money at an amazing pace.
So, now you may have some insight into my distaste towards doctors. My motherly diagnosis would be that the hives came from sun poisoning. The ticks or spasms came from one of two things. A triple medication change within a week or Sandifer’s Syndrome.
Sandifer’s is a severe case of acid reflux that can cause ticks or spasms. He always got the spasms after he ate and I’m not sure why no one listened to me on that one.
Long ambulance ride short, I hope this never happens to anyone, but being at the hospital did make me realize how lucky we are. There were too many families with little ones who were much, much, much worse off than we were and by the end of it, I felt guilty for having a baby there that even smiled occasionally. Hug your littles and be so, so happy they are able to be at home with you where you can take care of them, watch them, love them. Some parents are not so fortunate.