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.  😦