With Elle’s annual MRI and EEG stay looming, I thought this would be the perfect time and opportunity to touch on hospital crap. From what I’ve learned, what I pack, what I feel, and how I prepare my household for us to be gone, this post will cover it all… and give you a little glimpse into that intimate part of our world.

-EEG stands for electroencephalogram. It is a medical test that measures the electrical activity of the brain by placing electrodes on the scalp. An EEG can detect various brain conditions, including seizures, brain tumors, and sleep disorders. Elliott’s epilepsy is med resistant, so we do these annually. Sometimes they are 3 or more nights per stay. This time will be our first time with just one night hopefully! We’ve also done take home ones. That was exhaauuussstttttiiinnnnggggg.

– PET Scan stands for Positron Emission Tomography (PET) Scan. It’s a medical imaging technique that uses radioactive tracers to visualize and measure changes in cellular activity within the body.

A little background- Elle started having absence seizures around 2 years old. She got the diagnosis right before her 3rd birthday. Shortly after her first 3 night EEG stay, she started to get MRIs every 6 months then every year and she was just cleared for one every 18 months. The first MRI informed us that she has some cysts deep in her brain. They aren’t growing. We also learned from a PET scan that one of her Hippocampus is dormant.. totally dormant…. The one that houses the cyst clusters. We all have two hippocampus.

The hippocampus plays a central role in:

•Forming new memories

•Emotional regulation

•Navigation and spatial awareness

•Learning

So, if one side is underfunctioning, you might experience issues in any of those areas—especially memory.

Big shout out to ChatGPT for easily giving me the definitions for all of this stuff 🤣

Her appointments and stays are just to make sure nothing is growing or changing and managing her meds. And to see if she’s a surgical candidate at some point in hopes of removing her Hippocampus and leaving her seizure free. She also sees a genetic counselor, a GI specialist, and a psychiatrist on top of her Epilepsy Specialist down at UCSF. They are fucking magical down there. And about a 5 hour drive from our front door including stops.

So anyways, now that y’all are up to speed on things… let’s get into this.

My girl- she’s a travel champ. Her and I have done several there and back trips in one day. These trips are not cheap. Hotels, parking fees, bridge fees, food, gas, my husband having to miss work to help with our other two kids- luckily now our oldest is super self sufficient and super helpful with her brother when needed-and other small things add up. These trips have gotten much easier over time. We’ve got a great system in place which makes them so much easier to manage.

There’s so much that goes into these, I’m not sure where to begin or how to organize my thoughts.

Let’s talk about packing. My first stay I was so not prepared at all it was almost laughable. You are literally stuck in the room and cannot leave for even 5 minutes… for 4 days… sometimes longer. We’d have sleepless nights and I was hungry and really cranky and needed a gallon of coffee. I didn’t pack enough correct clothing for Elle to wear with the EEG hooked up.. This is a big hospital. Nurses are so busy. And working so hard. I feel guilty even asking for a water refill. And coffee didn’t come until 8am if I remembered to order it the evening before. By our 3rd stay, I’d become a master 🤣 I pack half of the house to take with us. But in a stressful setting, being prepared helps so dang much.

Let’s start with a list of stuff I bring for Elle.

-Button up clothing or loose tanks

-A treat bag to open everyday. This was a Lego set for 10 bucks or a new stuffy, stress toy. Something for her to have new to keep her busy to help pass time … the hours and days slowly tick by.

-Art supplies

-Her pillow and stuffies.

-Her favorite Princess dress that she lives in

-Slippers for both of us or grip socks

-Her fave snacks and water bottles- I even pack her bowls and plates.

-Diapers and wipes- the hospital provides them but last time they didn’t have her size diapers so it was hard to manage.

-NillyNoggin EEG cap. The tape and stuff they use always comes off in her sleep and rips her hair out… making someone come in and rewrap her daily. I’m so excited to use this and I hope it helps her sleep better.

Now here’s my list-

-Hand cream and body lotion and chap stick

-Amazing travel shampoo and conditioner( it’s nice to feel good in a weird sad place)

-Cozy cardigans and loungewear and pajamas. I’ve learned to get up and get ready for the day. Helps make time go fast and feels better to me.

-Books. I love to read and always pack two books to kill. Easy light reads are best.

-My journal

Here’s where things get good… 🤣

-Yeti backpack ice chest. I’m always by myself doing these stays. I push Elle in the stroller with one hand- put the backpack ice chest on my back, and then pull a big ass suitcase with the other hand. I put snacks for her, lots of yummy meals for me in it. Sushi, sandwiches, yogurts, COFFEE CREAMER, waters, stuff like that.

-A mini keurig, a billion coffee pods, and a pack of disposable cofee cups. Honestly, I bring two of my own favorite mugs and wash them in the sink becuase I love to use my mugs.

-Lots of IBU because my back breaks the fuck off from sleeping on the little fold down bed.

That should cover it. It’s a lot to pack and tote by myself. But it’s all been so dang helpful. Oh- always pack extra underwear, in case you stay longer and don’t want to wash your undies in the bathroom sink in shampoo and hang them to dry on the shower curtain line… 🤣🤣

Last time we stayed, my husband was able to come down and relieve me. I was able to take Miles to the zoo and do some fun things. It was wonderful for a break.. I got to go back to his hotel room and shower and order room service- it was freakin glorious. My husband stays home and works and takes care of the house and the other two kids when I take Elle for appointments. He’s active with the zoom appointments. But I handle the city trips. And Elle and I are now a well oiled traveling machine. We stay at the same hotels every time. Eat at the same places. And she knows what to expect. So it’s getting easier. My favorite Mexican food place closed by our fave hotel- best margaritas of my life- I still want to cry every time we go down and can’t go there. Side note- if your child has Partnership, you can call them, with info, and they will help fund hotels and food and tolls. I just did this for the first time and they made it so easy.

Shall we talk emotions? Fuck them. 🤣 No matter how big or small her appointments are, there’s always some sadness. I can’t help it. I can’t stop it. I can ignore it, but then my head hits the pillow or I start to drive and I’m like, mhhhhhh here we go again. And it’s crazy because, I know friends who go through so much more intense medical issues. I feel silly even thinking ours is a big deal. Things can always be worse. So I should not be upset. I have no right. I’m a special needs parent imposter. I feel like it’s very surreal and weird. You always know a friend of a friend or someone whose kids have medical issues. I do feel like Elle’s issues are pretty dang mild . I’m very thankful for that.

Her first MRI- totally nothing and easy. But still, it seemed so big and monumental. Like the pre show of what’s to come. She was so little. And screaming bloody freaking murder of course. Side note- she’s got horrible trauma from hospitals… like shakes and screams when we enter an office. She’s understanding more now. But it’s rough. But also getting easier. Anyways…. I held her down while they put her under. Then boom she was off. I was crying all the way until I found a bathroom with a mirror. I splashed my face with water and said- get it the fuck together man. This is so easy and routine. Then I had sushi and a soda. Then she was in recovery. And seeing her I cried again 🤣. Our girl is such a little warrior. It’s still weird and surreal to be like, Oh wait- that’s us. Our girl is actually a patient down there. I keep thinking it’s all fake. I got the info wrong and at one appointment they are going to be like- oh she’s totally fine and you don’t need to see us anymore. Maybe I’m the only one who thinks this way? I don’t know. It’s weird guys….

Needless to say, any medical crap is so exhausting. Im currently just slowly spiraling as I prepare for this next little round of appointments like usual. I feel for any family who has to do any single appointment that’s just even a tad out of the norm. There’s a lot of comfort just talking to other moms who go through this crap also… in any capacity. I see you all. And- to my friends and family who leave dinner for my family when I’m gone, or leave a meal for me to come home too. To the ones who have randomly sent me a Starbucks gift card for a coffee for the drive home. To the ones who have sent us with little trinkets to take with us down there, who have let me borrow a stroller or ice chest or keurig, and to the ones who just shot a text to check in…. And to two of my sisters, who dropped their lives and families for a night to do very quick there and back mri appointments with Elle and I so they could see this part of our normal, that was so huge. I’ll never ever forget those gestures, no matter how grand or tiny. This shit takes lots of love and support to make it through. And we feel it. 🤎🤎🤎

I will be updating my little shop on my website when we are in the hospital. I’m creating a hospital stay page. I’ll be adding some of our fave little games and items and all of the links that help make the stays much more manageable for us.