Lest one think I am a jolly penguin and all of the circumstances of the last six months have just rolled off my good-humor-insulated back, I am here to complain about all the crappy stuff that's transpired.
Since March 13, when we had our somewhat eerily-timed and, retrospectively, final showcase in our former studio space, it has been a non-stop rollercoaster of bizarre, sad, and often hilariously absurd circumstances.
Despite looming rumors of stay-at-home orders due to the developing coronavirus, Dancers Studio held its "Nightmare After Christmas" showcase (in honor of our third event in a row landing on a Friday the 13th AND LITTLE DID WE KNOW HOW WELL NAMED THE EVENT WOULD BECOME). Less one participant's cancellation, we had a lovely springtime Halloween-esque party that was strangely festive and very fun in spite of impending doom.
Days later, we were ordered to shut down the studio as we are considered a non-essential business. Like most people, we were hoping the studio closure would last a month or 6 weeks, but COVID wasn't going to be our only hurdle this spring.
Closing the studio was closely followed by schools closing, therefore moving our three school-age kids to "distance learning" (a crappy, unprepared version of homeschool with more screen time and too many slight procedural differences from class to class than I'd ever recommend) while entertaining the three toddlers and yet not leaving the house.
OH, DID I MENTION I WAS VERY PREGNANT AT THIS TIME, TOO? So, a month after quarantine started, I got to go on a field trip... to the hospital (thankfully with my husband) and have a baby. I felt terrible for first time moms or anyone with more complicated birth plans than "get the baby out", but our newest addition's arrival was barely impacted, less an uncomfortable stick up my nose at the outset and an intriguing "birthmark" on the leg of baby #7 (henceforth referred to as "Ernie").
In a surreal turn, a few weeks post-partum, we were vetted for a reality show by a delightful man who's resume makes Eldon Henson's look shabby. We had a reel made and everything! Hollywood doesn't interest us much, and generally the feeling was mutual, but it was a honor to just be nominated.
Just as the stay-at-home orders were lessening and we were preparing our "post"-COVID plan for teaching partner dancing (an interesting exercise while considering social distancing), riots broke out in sleepy Saint Paul, MN, culminating in many businesses in our neighborhood being set ablaze, including one next to our studio in the same strip mall. While we hunkered down to the sound of blackhawk helicopters, humvees, and constant police sirens, we wondered what could happen next.
Well.
Property fires means insurance and insurance means TIME CEASES TO MOVE FORWARD. We waited for the insurance adjusters to do their thing. And waited. And waited.
And then the entire strip mall was condemned. You know, including the space where our business existed.
We started making phone calls and visiting places that might rent space to our non-essential business. We were making pretty good headway on a cool spot or two when YET ANOTHER DISASTER STRUCK.
After a delightful Sunday at the beach and our first trip to a restaurant [patio] in months, Ernie had fallen asleep his carseat. While we queued up the only Star Wars trilogy worth watching, cute little Ernie took a nap. When he woke up after about an hour, I took him out of his carseat to change his diaper and presumably feed him. As I unsnapped his onesie to change his diaper, I saw his abdomen was black and blue from his belly button to his spine on his right side. Calmly horrified, but practical, I changed his diaper and made a mental list of what I would need to have with me at the hospital for at least a night as Gordon Facetimed a friend of ours with many medical degrees to confirm a trip to the hospital was in order.
Moments later, I was headed to the nearest children's hospital as Gordon called ahead to help triage with the ER.
The next hours were a blur of nurses, doctors, IVs, imaging, and tests. I hadn't gotten to feed him and he was now getting poked and prodded and was obviously crying and all the nurses would ask if he took pacifiers AND HOW COME NO ONE TOLD ME PACIFIERS WERE A MEDICAL NECESSITY and I felt horrible for my poor, hungry, mysteriously injured baby.
I couldn't tell you what day it was for several weeks, but those first couple days were especially blurry and month-long-like. At some point the day after arriving, after wee Ernest was sedated and intubated (I did not watch that and cried for quite awhile afterwards), Gordon came in and I went home.
I tried to sleep that night, didn't, woke up and spoiled all the children, and then drove back to the hospital. As I drove in, Gordon called to tell me Ernest had compression fractures in his spine and they'd heal in 6-8 weeks. As my wheels slowly turned, I figured that was some weird effect of being curled up in utero, but simultaneous to my slow gears grinding, Gordon said, "They called CPS and they think it's trauma."
In hindsight, I heard "retroperitoneal hematoma" and I also heard "trauma" a couple times in the first 24 hours, but those words didn't mean anything to me, because the kid was literally attached to me 23 hours a day and he was a pretty chill baby and had never given any indication that he was in pain or even discomfort, even as he was black and blue through his belly.
For the record, I had said "What else could happen?" while listing the crazy stuff that had happened in 2020 days before this event and I am kicking myself for thinking the worst was over.
AGAIN WITH THE HINDSIGHT, "retroperitoneal hematoma" and "non-accidental trauma" is all over Ernie's chart from that hospital. 98% or so of retroperitoneal hemotomas are from non-accidental traumas. Medicine being what it is, I UNDERSTAND WITH MY LOGICAL MIND that a Thing IS usually what it looks like. You got a clean cut on your finger? It's because you have bad knife skills in the kitchen, not because someone came after you with a throwing star and you tried to catch it.
You have to prove that obvious hypothesis, right? And LEGALLY, those docs have to follow a procedure to prove that obvious hypothesis because MALPRACTICE and LAWSUITS and JOBS. I UNDERSTAND THAT WITH MY LOGICAL MIND. I also do not envy the workers from Child Protective Services. They are either visiting people who need their help or people who don't and either way, all those people are going to be pissed, scared, and defensive.
And I was all of those things. I questioned whether I had buckled Ernie too tightly into his car seat for too long, whether one of his siblings had dropped a book on his back while he was taking a nap because I had found a book in his crib a couple days earlier, why I hadn't noticed his belly earlier, why hadn't I panicked at his every cry, whether my other kids would throw me under the bus with CPS because let's face it I yell a lot and I've definitely spanked a few of them, and now all the doctors and nurses think I'm a terrible parent and I was pretty sure I was going to throw up walking through the PICU after that phone call.
Our favorite nurse and PICU doc insisted it was all just protocol and they didn't think we abused our kid, buuuuuut they also didn't know what was wrong with him.
In one fuzzy morning consultation, a very lovely hematologist woke me from a nappish state and told me Ernie's platelet level was really low and that's indicative of a thing called "KHE" and I made him explain it to me like I was 5. But that was in between neurosurgery, radiology, ophthalmology, and nephrology consultations, MRIs, CAT scans, ultrasounds, and all the imaging and it got lost in the shuffle. But I remember him and he was a fuzzy angel who reminded me of my awesome uncle.
THEN, after asking several times if his condition had anything to do with his "birthmark" (you didn't think I foreshadowed that for nothing, did you?!), I asked the PICU doc again, and as they'd had nearly every specialist I've heard of (and not heard of) in to test their trauma theory and nothing was adding up, he asked, "Did you ever have it looked at?"
And I said, "Yes."
When Ernie was 10 days old, he had a tele-visit (COVID procedures and all) with a dermatologist at the U whose name was "very Irish" (which was all I could remember after four days of little sleep and more than a few emotions).
So the doc gets on the computer, finds the doctor, calls her up, sends her a couple MRI images (with my permission, duh), and she says, "I think I know what it is, and we have a whole team that deals with it over here."
Within an hour, Ernie and I are transferred over to the University of Minnesota Masonic Children's Hospital where we have a very cohesive team of specialists: hemonc (hematology/oncology and obviously the coolest abbreviated name), dermatology, nephrology, general surgery, and interventional radiology.
[When I told the kids about all the teams we met with, the oldest scoffed when I mentioned General Surgery. I paused and asked, "Are you wondering if there's a Lieutenant Surgery?" and she said, "Yes" and we laughed. See? Medicine is funny!]
DID I MENTION EVERYONE'S LOVE LANGUAGE IS FOOD AND I STILL HAVEN'T COOKED SINCE AUGUST YET? Thank you if you ever thought a nice thought to send our way or did anything even further than that. And since someone asked recently, but I still feel weird about it, here's the fundraising page my wonderful sister-in-law set up for us.
And while there was a couple moments that I questioned our transfer (man, I loved those nurses at the other hospital and post-sedation at the new hospital was very... Matrix-like), this gang of doctors (I vacillate between calling them the Avengers or the mafia because there were always many of them, it being a teaching hospital and whatnot) seemed to think his "birthmark" and his bleeding/low platelets were related. Which obviously made more sense to me than trauma.
But there were still tests. And scary moments, days, ah hell, weeks. Intubations and NPO orders. Jargon and asking what all the jargon meant. Oh man, I asked so many questions. Times when I made Gordon ask the questions that I couldn't (like, "Is he dying?" which Gordon asked of my favorite favorite doctor and that doc gave a great, "No," with more reassuring words than just "no").
There weren't a lot of answers for a long time, which seemed weird to me, because SCIENCE. MEDICINE. MY KID.
And then there was a "working diagnosis", which I take to mean "pretty good guess". That diagnosis still sucks, and sounds bad, and don't Google it (good God, please don't Google any medical things), but he has KHE with KMP.
Kaposiform hemangioendothelioma with Kasabach-Merritt Phenomenon.
Don't worry, I'll translate it for you: it's a rare, aggressive vascular tumor(s) with extremely low platelet count (those things that make your blood clot when you're bleeding).
The retroperitoneal hematoma was from one of his tumors bursting or leaking and since he had such a low platelet count, it couldn't clot. It might have started months prior to our ER visit, but there was no way for anyone to tell something was wrong because he didn't have any clinical signs of distress.
Which all sucks.
But doctors and nurses and medicine are awesome.
The problem, I found out recently, is that Ernie was "too okay". He looked and acted like a "normal" baby: he wasn't/isn't sickly, crabby, uncomfortable; he didn't have any other clinical symptoms besides high blood pressure, this crazy hematoma, and a "birthmark" (which really looked and felt more like a birthmark than a vascular lesion).
While the Hemonc docs had suggested KHE early on, it was still a very atypical case. Most kids don't get it in two places (Ernie has a very decent sized tumor in his abdomen, along with on his leg), it is isn't "spindly" like Ernie's (his wraps around several organs, including the islets of langerhans which is not a Tolkien reference but an actual part of one's pancreas) and his isn't concentrated in one place as most cases are, and it hurts (and his seems not to). JUST THINK OF THE SYMBIOTE VENOM AND YOU'VE GOT IT.
Apparently Ernie is less than 1% of kids (especially babies) who takes their medicine orally (so says our most regular nurse, who can name on one hand BY ACTUAL NAME [not that she did, because HIPAA and all] kids who have taken oral medication under her watch), but he'll be on this particular treatment for 4-5 years at which point the tumors should have "shriveled up" (as our trusty General Surgeon put in) and he won't have any side effects.
Until then, we visit the clinics about once a week for consultations, checkups, dressing changes (he has a central line put in to make his blood draws easy; it still freaks me out but he doesn't seem to notice it), lab draws, and tests. Our next big update will be at the end of October when he gets an MRI and the docs can see if his treatment is affecting his tumors.
DID I MENTION I GET STRESS-INDUCED ASTHMA? Aaaaand we're still looking for a studio.
Cheers, 2020. You're putting up a good fight.
