The Follow-up

We had our appointment with the neurologist this morning. It went well, all things considered. Really well, I’d say.

Our doctor did indeed have the results of the dumping’s MRI. He didn’t find any of the things he was concerned about (“crossed wires” or, even more frightening, a mass). He did note what’s called low-lying tonsils. Basically part of the dumpling’s brain protrudes through the base of his skull into his spinal column. Right now, all this means is something to monitor and triggers a follow-up MRI in a year. Our neurologist said that in the majority of cases like this (young patient, developing brain, etc), the malformation corrects itself. In about 25% of cases though, the malformation gets worse and he would be officially diagnosed with a Chiari Malformation. Which, if you open that link, is also a scary thing, but our doctor assured us that this is the type of thing we would have never known about without this early MRI and it’s quite possible that the dumpling will never have signs or symptoms of the condition. It’s simply a case of being able to know a little too much, much like his heart blip in utero.

As for the epilepsy, he’s been officially labeled as such, but in a softer, he’s-likely-to-outgrow-this sort of way. We’ll be continuing on the anti-seizure medication for two years. If he’s seizure-free for two years and has a normal EEG at that time, then we’ll discuss weaning him off of the medication. Another seizure-free year after that and we’ll be released from the care of the neurologist with a perfectly healthy preschooler. It sounds like a long road, but I’m hopeful that all will go smoothly and the dumpling will never have another seizure.


In other very important news, I bought the dumpling THE CUTEST pair of overalls at Hanna Anderson today and I cannot WAIT to try them on him!

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Home again

We had the MRI this morning. The whole day has actually gone about a thousand times better than I had anticipated. (Yay for low expectations!)

The dumpling got up at a perfectly reasonable 5:45am and I studiously ignored his signs for eat as I got him and myself dressed. We chased Luffy around the house, his absolute favorite activity, for a while and then hopped in the car on schedule. He remained in good spirits for our entire wait at the hospital, which ended up being a little longer than anticipated due to an MIA anesthesiologist. We kept him entertained by reading his favorite books pages and letting him pace the room. He’s still a new enough walker that pacing a teeny, tiny recovery room is exciting.

He charmed his nurses with big smiles and a generally good mood – right up until we walked into the MRI room. They allowed me to accompany him, though he must have sensed something was UP because almost as soon as we walked into the room he wrapped his arms tightly around me. Because children as young as him don’t usually cooperate with being poked with an IV needle, they actually knock them out using gas first and then place their IV for general anesthesia. Which was great for us! That was seriously my biggest worry – wondering how on earth I was going to keep him calm and still enough to allow an IV to be placed. The hardest part about this method was keeping his arms from pushing the mask away. He fought me hard at first and then his resistance and strength tapered off until he was asleep. I gave him a kiss and they escorted me from the room.

I got choked up a bit, as I was leaving. There’s something about seeing your child lying on a hospital bed that just really cuts through to your heart. Plus, the general anesthesia is perfectly safe, but you start to worry. What if something goes wrong! He’s so tiny. So sweet. Please take care of my baby. The nurses must have read my mind because they assured me they’d take good care of him as I left the room.


When we returned for him, he was still asleep, thankfully. He was sleeping so well in fact that we had to rouse him after a while. He handled it beautifully and they discharged us with warnings of nausea and drowsiness and irritability and night wakings. So far, he’s had none of those complaints (although famous last words, I know).

Though he dozed in the car on the way home, he was up until 1:30 when we put him down for a nap. Since the anesthesia can cause nausea, I tried to start him slow on water and cheerios. I tried, I really did, but he quickly moved on to strawberries and clementines and applesauce and oatmeal then puffs and sausage and two ounces of milk – no two more – no four more. They did tell us they gave him a dose of an anti-nausea medication, so I’m hoping we don’t see some sort of relapse once it wears off, but he’s been doing well so far.

And that’s where we are now. He’s still asleep and I’m watching him closely via our monitor. I checked him in (online) for his appointment with  his neurologist on Tuesday. And now we’re just going to kick back and enjoy our weekend.

Back to the routine

I must say, it feels good to slip back into a routine.

That was completely me. I lost all sense of the days and, even this week, I’m still lost as to whether it’s Tuesday or Wednesday. I used to love the times of the year when you get to kick back and lose yourself in the days of leisure, but with a toddler who does much better with routine, it feels so good to sink back into our cozy routine.

Unfortunately, our routine is being disrupted yet again this Friday by the dumpling’s MRI. Luckily, it should be fairly short, all things considered. I mean, the poor baby has to be sedated for the procedure so I was concerned they’d want to keep him for monitoring. I spoke to the radiology nurse yesterday though and she assured me that we’d likely be on our way by 10am at the latest. I still plan to keep him home though, to monitor him myself, so Friday should be an interesting day.

Luffy and I were talking the other day about how strange it is, having a child, in certain situations. For instance, while I was talking with the radiology nurse, she told me that two adults can wait in radiology, but then only one adult can go back with the dumpling. She said that adult could remain with him until he was asleep and then that person (which, who are we kidding, is going to be me) will be removed from the procedure area. And when she said that, my heart just seized up as my mind conjured up the image of my son under sedation, all alone in an MRI room. I won’t be allowed to rejoin him until he’s in recovery and I’m praying that he will take longer to wake up because I don’t want him to wake up without me being there. I mean, if he wakes up and no one’s there… my heart can’t take that.

Or, another example of this odd phenomenon where my heart squeezes involuntarily: our daycare is hesitant to move the dumpling into the next class (the toddler class, for ages 12-18mo). The dumpling’s 14mo now and finally walking pretty well. He’s actually already on the school’s lunch plan and we’re beginning to shift his schedule to align to the toddler class, so we asked them about the timing of his move to the next class. When they hesitated, we pressed and they told us that they thought he was too small. At first, we were dismissive (and also probably a touch defensive), but really, he’s small?! He’s probably always going to be on the smaller side of the class, at least until he hits his first pubescent growth spurt. What’s the cutoff here? I mean, if you hold him back for his size now, what about the next transition? He just broke twenty pounds (which we know thanks to a visit last Friday to our pediatrician!*), did they want him to be 22lbs or 25lbs? What exactly was their goal?

So, I asked my mother. A long, long time ago, she worked in a daycare (actually several, including running her own in-home daycare). My first clue as to the depth of her concern was that I texted her and she called me back. (Complete sidebar here – whenever you elevate the method of conversation, it always feels a touch more dire. Like if you email someone and they text you in return – or, in this scenario, you text someone and they call you back instead. But I digress…) She told me that if the daycare managers were hesitant to move the dumpling because of his size, it was very likely that the next class has some “assertive” toddlers – i.e. the toddlers that are in the pushing and hitting phase. His teachers have told me time and time again that if another baby takes a toy from the dumpling, he just goes to find another. He has such a sweet and passive personality (most of the time!). My mother said that she’d listen to the daycare managers, because she’d hate for the dumpling to go from a stellar daycare experience (seriously, he loves his teachers and class so much) to a classroom full of “bullies” who will quite literally run him over, physically and figuratively. And y’all – my heart just hurt for my son. It made me want to scoop him up and give him a hug. Or follow him into the toddler class to run interference for him against all of those bigger, pushier toddlers. Or, better yet, just keep him in the infant classroom with the teachers who already love him! Yes! Let’s do that!

Parenthood, right? It’s frustrating and fulfilling and heart-wrenching, all at the same time.


Now for a little observation that I really want to jot down:

My sweet baby has always loved to read. He loves books and turning the pages and lifting the flaps and hearing the stories. One of his favorite books (which was actually one of my favorites as a child!) is Chicka Chicka Boom Boom. He also really like Sandra Boynton’s Doggies when he was really little, I think because of all of the doggie sounds. He’s gone one step further lately – he actually has favorite pages. And it’s very clear because he will thumb through a book with purpose until he lands on a particular page. And if we’re reading the book and I turn the page away from his favorite, he’ll immediately turn it back to have me re-read the page. Squee! Isn’t that just adorable?!

Right now, his favorite pages are the “nine dogs on a moonlit night” page from Sandra Boynton’s Doggies because we howl at the moon and he thinks that’s hilarious. His other favorite page is the “di-no-saurs sing-ing a di-no-saur song!” from her Oh My! Oh My! Oh Dinosaurs!. I think he likes it because I sing the words with much flair and embellishment. Plus, I occasionally decide to show off my skills at holding a note and hold on to the “song” until he’s smiling like a fool. Good times!

Anyway, wish us luck for Friday. I’m ready for next week when we can slip even further into our comfortable routines.

*The trip to the pediatrician last Friday was unscheduled but ultimately uneventful. The dumpling had a cold over Christmas, as I’ve mentioned. He ran a fever Friday through Sunday, but woke up fever-free on Christmas Day (Monday). He seemed to be improving and then he ran a fever again on Thursday afternoon. He didn’t have a fever Friday morning, but I spent a restless Thursday night with him as he tossed and turned and dozed fitfully. So, we went to the pediatrician’s for a clean-ish bill of health. Good thing too because the radiology people weren’t too jazzed about him having had a cold so recently and were quizzing me to make sure he hadn’t been diagnosed with the flu or RSV or something.

The Aftermath

[Click here if you’re wondering what I might be referring to.]

Questions for the group: when will I stop compulsively watching the dumpling sleep? When will I stop latching on to random things (why’s he doing that thing with his leg? he’s never done that thing with his leg…) and wondering if they’re a sign or symptom? When will I stop feeling his forehead and cheeks for signs of a fever? When will I stop grabbing the thermometer when he cries in the middle of the night? When will I stop questioning whether this outburst is a symptom of his medication as opposed to a typical toddler tantrum? When will I stop looking at my child and wondering if this was a turning point (we had a great first year with him and then he had that seizure and things were never the same)? I know that’s an irrational thought, but it still crosses my mind and I wish it wouldn’t.

I told you that he was in the monitor’s blind spot when it happened. We bought a second monitor to eliminate the blind spot and I am absolutely perturbed that, in the day of Prime Now and same day shipping, it’s not getting here until next Tuesday. We now have both infant Tylenol and children’s Motrin on-hand. Previously, I just had Tylenol. I will no longer wait for a “moderate” fever to treat him and Motrin, with its 8 hour life, will be my go-to.

As terrifying as Monday night was, one of the worst moments occurred Tuesday when we got home. He needed a diaper change and my breath caught as I walked into his room. It was exactly as we left it. My slippers cast aside. The cloth diapers I’d grabbed as rags to catch the drool and vomit. Paraphernalia from the paramedics – a syringe wrapper and cap, for instance. The dumpling’s zippy on the chair and his pj’s in a heap on the floor. I couldn’t deal with it and asked my mom to straighten up. Just this morning, I went to grab his laundry and saw the pj’s. It all came rushing back as my mind conjured up the image of my son, convulsing and panting, eyes unfocused and hands drawn to his chest. I’m not sure I’ll ever be able to put those pj’s on him again.

I know that time will soften this, but I can’t help but wonder how much time it will take. Part of me wishes we could fast forward to the point when all of this is an afterthought. For the year when I’ll say something like, oh yeah, you did have a seizure as a baby. In the meantime, I’m doing my best to stay positive and enjoy my son without all of the worries clouding my brain.

As a little PS anecdote, the paramedics who treated him Monday night were back on shift today. They stopped by our house to say hi and see how he was doing. They were happy to see him up and about. I was deeply touched by the gesture and wish that I could find a way to repay them, to thank them as profusely as they deserve. 

[Exhale]

When I first saw the dumpling sit up on the monitor over three hours after he had gone to bed Monday night, my first thought was oh maaaaaan, I hope he goes back to sleep. A selfish thought. I wanted to relax and head to bed myself, not spend twenty or thirty minutes patting and shushing. When we saw him lay back down only moments after sitting up, I silently urged him to go back to sleep. And then, we heard a cry. A startling, piercing, interrupted cry. He was in the monitor’s blind spot, so we couldn’t see him, but the cry was so out of place that both Luffy and I raced back to his room. Luffy got there first.

“Oh god,” he muttered to me or perhaps God himself as he picked the dumpling up. He passed him to me and even in the darkness, I knew something was terribly, terribly wrong. My baby was having a seizure.

Luffy flipped the light and asked me what we should do. I passed the dumpling back to Luffy and didn’t hesitate as I raced for my phone to call 911. When I returned, on the phone with the operator, Luffy was on the floor holding the still-convulsing dumpling. In what will probably be the longest minutes of my life, we anxiously awaited the paramedics as I raced around gathering diaper bag and wallet and shoes. The dumpling was still convulsing when the paramedics arrived and would continue to convulse for several minutes (right up until they were about to administer an anti-convulsant). The total length of time: 13 minutes. Thirteen agonizing, heart-breaking minutes that are seared into my memory.

The dumpling had actually had a fever that night, a mild one, but since he was still eating, drinking, and playing normally, we sent him to bed without a dose of medicine. The paramedic explained that it was a likely febrile seizure (seizure caused by a sudden spike in temperature in young children), but he advised we go to the hospital due to the length of the seizure. (A typical febrile seizure lasts about one to two minutes.) It was the first time I’ve ever ridden in an ambulance. Luffy followed behind as we traveled to a local Children’s Hospital. In the ambulance, the dumpling was stiff through his limbs and unfocused. He began emitting a constant cry/whine and the paramedics were unsure if he was lapsing into another seizure or coming through what’s known as the postictal state (a state of confusion and drowsiness following a seizure).

Once in the ER, the nurses and doctors began to examine the dumpling. They too were unsure of the second seizure or postictal state question, but moved him to a trauma room that was better equipped. In the end, the dumpling would need two anti-consvulsant medications delivered through an IV and respiratory support to bring the seizures and postulating (tightening of the muscles) under control. A CT scan was performed (especially in light of the fact that he bumped his head on a window sill Saturday night), but nothing was noticed there. In order to identify the source of the fever, a nasal culture and urine tests were analyzed, but the hospital was unable to find an explanation. We were admitted for the night for observation.

In the morning, the pediatric neurologist opted for an EEG, a test that would analyze the electrical patterns from the dumpling’s brain. This would better tell us if the dumpling just had one (though frighteningly long) seizure or more than one seizure. If his EEG was normal, we would be good to go without any follow-up care. If his EEG was abnormal, we’d proceed with an MRI. His EEG was abnormal and confirmed that the ER doctors likely saw a second (or even third) seizure that night. We have an MRI scheduled for January. We’ve also started a daily epileptic medication to help ensure the dumpling doesn’t have another seizure in the meantime. We were discharged from the hospital though, under our insistence that the dumpling get a good night sleep that night. (The neurologist had initially suggested keeping the dumpling a second night and having the MRI done inpatient, first thing this morning.)

Unfortunately, the dumpling was still running a fever this morning. We’re following his pediatrician’s advice for dosing him up with Motrin and Tylenol to keep the fever down. He’s cranky and tired, not that I blame him. I’m longing for my happy baby to come back. I wish I could make all of this better. I’ve started researching epilepsy, but I can only take so much (it’s never a good idea to look at medical reviews online but it’s an even worse idea to read through them for your child). I want to watch the dumpling chase after Luffy. I want to watch him sort through cabinets. I long for Saturday when all of this hadn’t happened and we were blissfully unaware of a potential problem with the dumpling’s brain.

I have to stay calm and positive though. We’ll take each day as it comes. Once the dumpling gets over whatever is causing his fever, I think I’ll be more capable of tackling the rest. After all, he’s lived 14 months with a brain that might be prone to seizures. If you’ll excuse me now, I need to go cuddle my baby some more.