It’s been almost three weeks since the seizure that paralyzed Kelsey’s left arm.

And I don’t know what to do.

Let me start from the beginning in case you don’t follow me on social media or haven’t heard all the lovely, intricate details.

First, it’s important to start with the fact that on Tuesday, October 9th, Kelsey had a check up with her neurologist.  We went and she showed off all the new tricks she had learned since our last visit six months ago.  She walked independently and told the doctor about her Halloween costume.  Her doctor noted Kelsey’s great improvements. Here’s a video from the morning of the appointment.

 

Despite the fact that Kelsey had gained almost 5 pounds since her last appointment, her doctor decided to keep her on the same dose of anti-seizure medicine she’s been on for about a year.  She was on a “moderate” dose for her weight and the doctor thought since it was working, why change it? So we went on our merry way after setting our next appointment for March.

Then, two days later, on Thursday October 11th (I’m getting sick just thinking about it), I walked in to wake Kelsey for school around 7:40am and she was having a seizure.  This presented exactly the same as the ones she experienced in September and November of 2017.  It’s referred to as a tonic-clonic or grand mal seizure.  Fully body jerking.  Rigid arms and legs.  Eyes rolled back.  Rapid breathing.  It’s exactly what you’d picture a seizure to look like on TV.  It’s nothing like the seizures she started with as a toddler that were more like small, brief spasms.

I’m sick thinking about it because like the other two times, Kelsey was sleeping later than usual, and I was using the breather to drink my coffee more leisurely, make lunches and chat with Ben.  All while Kelsey was likely seizing with no one to notice or help.  I sleep with her baby monitor right next to my pillow but the sounds aren’t noticeable from the monitor.  Our kitchen is about 25 feet from her bedroom but I couldn’t hear anything amiss.

So, I walked in to wake her and found her seizing.  She had a bloody nose which is unusual for times when she’s seized before but not unusual for her in general (or me!).  She had also gone number two during the seizure.  Dave was out of town for work.  All I could do was to yell for Ben.  I told him to call 911.

God bless my sweet son.  We’ve practiced this and he was there for seizures #1 and #2 so he knew what he needed to do.  He found and unlocked my phone, called 911 and proceeded to tell the operator “She’s having a PROCEDURE!!!” Ha! I even managed to laugh at that despite the chaos in the room!

I took over on the speaker phone all whilst changing a dirty diaper and the pajamas the accident had ruined.  I had to clean her up for obvious reasons, but also to administer the rectal rescue medicine we have on hand after the 2017 events.  Poop, blood and rectal valium while on the phone!  Good times!

After EMS was on their way, I called Dave’s parents who live next door (PTL!) and told them to come right away.  By the time they arrived the Diastat had worked and the seizure had stopped.  I have no idea how long she was seizing.  Her pillow was SOAKED with sweat in addition to the other bodily fluids.  That makes me think the seizure was happening for quite some time.  The 2017 seizures clocked at least 45 minutes to an hour each.  Those had trouble breaking even with meds.  It seemed this one lasted awhile but stopped quickly with medicine.  For which I was so grateful.  Especially without Dave there.  It is sheer agony to watch your baby seize continuously.

EMS took us straight to Hopkins which was another blessing.  The last two times we had to go to Carroll County General first, only to be transferred which only makes a unbearably long day even longer.  I think the fact the Diastat had worked was a big component in this decision.  Also the fact that we had just been to see her neurologist two days earlier.

Regardless we arrived at the Hopkins ED and a number of tests were run.  Long story short, we were released to go home because the seizure seemed to follow the pattern of the last two and we were sent home so Kelsey could recover.   The dosage of her meds were increased.  But that was it.

Because you don’t have all day to read my novel, I’ll continue to abbreviate where I can.  The next day Ben went to school and Kelsey was still really sleepy and out of it.  The seizure takes it out of her as does the Diastat.  I felt like she was less like herself than the times before but Dave remembered a lot of the fatigue.  I was concerned because Kelsey was having trouble drinking from a straw like she normally does and wasn’t really waking to play much or eating.  While she and Dave were snuggling, he happened to noticed that she wasn’t using her left arm at all.  Furthermore, her face seemed to have a bit of a droop to it.  We notified the doctor and she told us to come right in.

So back to the Hopkins ED we went.  We suspected Kelsey might be admitted overnight for monitoring and we were right.  She had two tortuous MRIs that night and X-rays.  She had blood work taken and an EEG in the morning.  She was seen by orthopedists and neurologists and pediatricians.  Everyone seemed stumped.  Kelsey didn’t have a stroke.  It wasn’t the polio-like virus going around.  She did still have some activity that was different from her baseline on the EEG but nothing was done about it.   After a good amount of discussion, we were sent home the next day (a Saturday) to spend the rest of the weekend healing and waiting for the use of her arm to come back at home.  Sunday came and went.

On Monday we updated our doctor. We had seen no dramatic improvement to Kelsey’s arm or facial droop.  Up until this point though, her arm was very limp.  If you held it up, it dropped immediately.  But by the time we called on Monday to update the doctor, Kelsey’s arm had almost gone the other direction, figuratively.  Now it was super-rigid and tight.  Clenched.  The doctor said she’d like Kelsey to have a three hour MRI under anesthesia.  Because of outpatient scheduling for such a thing, we would need to wait for an appointment to open later in the week.

In the meantime, that afternoon, Kelsey had another seizure.  Her grandparents were visiting her after her nap and after Ben returned from school. I went in to get her changed and ready for dinner.  She seemed “off.” Crankier than she had been.  And not a minute later she had another seizure.  Same deal.  Rigid.  Eyes rolled back.  Luckily everyone and their mother (literally) was there and I witnessed the whole thing from start to finish.  We gave her the rescue med and the seizure ended before we could even finish with the 911 operator.  We decided to drive to Hopkins ourselves this time.  And we knew she would be admitted again and given the long MRI.  She was and had the MRI the next morning under anesthesia.

Side note.  It is not a good thing when ED and PACU nurses know you well.

“Oh yeah…I was here with your son in August!”

“Not you, again!?!”

To try and speed this along, the long MRI that next day showed NO STROKE.  No brain damage. Hallelujah.  But what the hell!?!  Why was she still seizing?  Why couldn’t she move her arm and face? It was decided that the activity on the EEG was causing the seizures.  The seizures were causing paralysis.  We were given another anti-seizure med and sent home.  Luckily that worked and we haven’t seen another seizure in two weeks. But unfortunately she can’t use her arm.  It’s still tight.  Clenched.  Rigid.

I’m frustrated.  Confused.  Sad.  We saw Kelsey’s doctor last week and we were told that it’s not unheard of to have paralysis post-seizure. It’s unusual that it hasn’t gone away yet but not undocumented.  We asked if it could be permanent?  That was neither confirmed nor denied.  “We’ll have to wait and see.” You’ve GOT to be kidding, right??? This canNOT be her future, right???

The good news?

The facial droop is gone.  Kelsey recognizes that her arm is not functional and it pisses her off.  She picks it up and moves it with her right hand.  She can control the clenched arm every so slightly.  But she can’t use it to pick up or hold things, point, or “Give 5.”

Another positive is her school and teachers.  They are always so accommodating and welcoming whenever she is ready to return to school.  The get her new chairs to support her, walkers to use with an adult helper, and technology to help fill in the new gaps.  And.  Well, she’s still cute.  Her spunk has returned and her constant questioning is already driving me bonkers.

Bad news?

Well…she can’t use her left arm.  That’s pretty big.  Dressing is a pain! Using the bathroom is a pain!  And she’s definitely regressed in that area.  She isn’t independently walking so it’s a lot of lifting and carrying.  Playing is hard because, well, she’s used to two limbs. And the only thing we are supposed to do is wait, pray and do physical therapy–that is no longer covered by insurance because we only get 20 annual visits like “normal people.” Waaaaaahhhhhhhhhhh!!!!!

And the questions.  What do we do?  How much therapy is right? Should she miss school for it? What about falling behind in school? How will she trick or treat?  Do we need a new mobility device? A motorized wheelchair? Should I start finding clothes that zip or button down since T-shirts are not easy?  What do we do???? Do we seek a new acceptance?  Is this our new life or an in-between?  I always need a plan and this is so messy.

Thanks for listening.  Thanks for your support.  Thanks for the meals. They prayers. The texts.  The hugs.  I apologize if I haven’t/don’t comment back.  Or if I’m quick to push back. It’s A LOT.  All of it.  I need to share.  And I need to be silent and be alone.

XOXO,

Kim

 

 

I’m currently blogging from Kelsey’s bedside in 9 North of JHH.  She had a major seizure on Thursday and has some paralysis on the left side along with continued weakness and fatigue which means we are still in the hospital for monitoring.  I’ve spent a lot of long hours…days…nights in the confines of Johns Hopkins Hospital in the last 11 years and have learned a lot.  Keep this list handy for the next time you’re planning a trip to the hospital!

Sleep mask

Sleep is really hard to come by in the hospital. Vital signs are usually checked every four hours so forget about sleep overnight.  That along with uncomfortable and unfamiliar beds, beeping machines, the occasional 2 AM trip for a second X-ray, and way too much light in the room–sleeping is tough.  And personally, my roommate (at this point)  has always been 5 years old or younger and used to being alone in a pitch black, dark room that sounds like a jet engine from the white noise machine. Most of that you can’t control…especially your own child. But you can control the light with a sleep mask.  I threw mine in at the last minute when we headed in yesterday, predicting an overnight stay, and it really worked wonders.

Car Seat

This seems obvious but we came to the hospital by ambulance on Thursday.  My mom came to hang with us and then bring us home and she only had a backless booster seat in her car for Ben. The ride home was already treacherous enough with rain during rush hour, but I’m pretty sure we should have been fined by the child-restraint police.  Especially, come-to-find-out the next day that Kelsey didn’t have full control of her left side due to some post-seizure paralysis.  Oops.  #badmom

Toiletries

This is obvious but after Kelsey’s last seizure last November, which was the second one in two months where we spent the night in the hospital without warning, I went to Target and made myself an emergency toiletry kit to keep in a backpack, much like ones pregnant moms pack in preparation for their trip to the delivery room.

The bag has travel sized deodorant, contacts (thank goodness for disposables), face wipes, lotion (hospital air is so dry), shampoo and conditioner, body wash and dry shampoo.  I was so grateful to find it on Thursday when we brought Kelsey in.  I had forgotten it was in there and was so pleased with myself. It all came in handy for our overnight stay. And I didn’t have to send Dave home with a list of a thousand and one things to bring back the next day.

Comfortable shoes and clothes

When Kelsey and I stayed at the hospital in January for a week I really overpacked.  Just like every trip I go on.  Hotels or hospitals, I like to be prepared! But hospital rooms, even the big ones, are small. Storage is limited and there’s just so much going on in there that the less stuff, the better. Clothes that work as PJs and vice versa are best. Yoga pants, t-shirts, zip up hoodies–one outfit for every 24-48 hours.  You can get lots of steps in at the hospital so comfortable shoes are good to have…I’m talking slippers not sneakers. Let’s not get crazy and think about burning calories.  Calories don’t count here, people.

Sense of humor

It is so hard.  Especially during the throws of tortuous, machine gun MRI sounds and watching your baby in pain.  There is little smiling at those times.  But most of the time at the hospital is spent waiting.  Sitting.  If you can’t laugh, you’ll cry, so find a way to smile.  Even if it is at the expense of the hospital staff.  Or even better, yourself…

All the devices

Speaking of the boring, waiting factor, I don’t know what people with chronic conditions (and their family members) did before smart phones, tablets and laptops. We use ours for communicating with all of you, for white noise during sleep, for googling new diagnoses, to blog, to work and obviously to Netflix and chill (get your mind out of the gutter people…I’m talking Friends and OITNB). Also, charging cordS.  You can never have enough.

Your wallet

Y’all the hospital is EXPENSIVE! I bought a pre-prepared chicken salad sandwich for $9 the other day. Stupid. It’s not even that good.  You can get the cafeteria meals but they are REALLY not good. So bring money because you’ll need it.  Generous friends gave us a Visa gift card for our week-long stay in January due to Kelsey’s hip surgery and it was so, so helpful–and used! Also, JHH has some cute gift shops and if retail therapy is your thing like me, you’ll enjoy a little shopping.  I bought Kelsey a baby doll today and myself a new hat.

Girl, where’d you get that cute hat?!

Oh you know, the hospital, of course.

Also, the gift shop has all the junk food you can’t buy from the cafeteria.  If you eat your feelings like me.

Wine

If you’ve been reading awhile you know I like my grape juice. People have been known to sneak wine in for me and this time I threw in a little in the bag myself. This ain’t my first rodeo.  It feels scandalous and it’s never as enjoyable out of a styrofoam cup, but sometimes a girl’s gotta do what a girl’s gotta do.

Pillow

Their’s suck.  That is all.

A friend

I am a VERY independent person and actually really like to be alone.  The hospital is not a place to be alone.  There is so much information to give and take.  And it’s often under duress.  If you’re at a teaching hospital like us (bless you), you have to repeat things over and over and over and over again.  To the attending, the fellow, the resident, the nurse, the tech, the transport.  It. Is. Exhausting.  Having another person there to help, explain and relay information when you have nothing left in you is key.  Also, sometimes you just need to take a walk and breathe.  Someone else to sit with the patient is so helpful.  My favorite friend is Dave, of course.  My mom also did a bang up job this week on Seizure Day when poor Dave was stuck in Detroit for work.

Kelsey update–For those of you who don’t follow me on Facebook, A) Please do so; it’s just easier and B) Kelsey had a major (we think the biggest yet) “Tonic Clonic” seizure on Thursday.  We came home that night but noticed that she wasn’t using her left side on Friday.  We returned to the ER and were admitted overnight.  She was diagnosed with “Todd’s Paralysis.”  Unfortunately, it didn’t go away as quickly as it should.  We were allowed to come home to monitor her and will touch base on Monday if it’s still not back to baseline.  Good news-she has regained her ability to use a straw and the tone has returned to her left arm.  Also, when we were trying to get her to perform in the hospital we talked about Ben and a nurse asked how old he was.  She said, “eleven” very clearly… which for her is really good…especially since he hasn’t even been 11 for a month.  I’m not sure he’s even internalized it (just kidding Buddy)! So I think we are moving in the right direction.  But, please keep PRAYING!!

And for a baseline comparison:  Below Kelsey on Tuesday.  Five hours before she went to her neurologist for a weight/medicine dosage check where it was decided that her seizure medicine was the right amount for her weight (even though she gained four pounds since this amount was decided in November).  And 48 hours before her most damaging seizure yet.  😦