For me, like many of you, a week long stay in a hospital room sounds like a nightmare! It is NOT the Four Seasons and it’s NOT a quaint AirBnB and I want a refund! All jokes aside, we had no idea what to expect when we were told that our sweet Eva Rose had to do a four to seven day stay in the hospital for a twenty-four hour EEG. First and foremost, why in the WORLD do they call it a twenty-four hour EEG when it’s really a twenty-four/seven EEG?! Come on Docs, you really need to step-up your test naming game. I feel it’s important to share this experience with families who are about to traverse the same path as we did. This is our story of our six day stay at Monroe Carell Jr. Children’s Hospital at Vandy and the weeks leading up to our stay.
Eva Rose is an extremely joyful, six-year-old kindergarten student with Autism. She is severely speech delayed and started having visible seizures in June of this year. She started having these “episodes” two weeks before her, perfectly timed, six-year-old wellness checkup with her PCP. We discussed what we were seeing and how often they were happening; which at that point, she was having maybe two or three a week. I had no idea what was happening when, for seconds at a time, she would fuzz out (a.k.a. poop eyes. All of you know that look), wring her hands, take weird breaths and then go straight to sleep. I witnessed this a few times before I realized or even thought that she might be having seizures. If you aren’t with her all the time, you would have no idea that she was having seizures. It happens so quickly that most people miss it unless, those who know what to look for, point it out. If you’re not familiar with absence seizures, you would miss it too. Due to her amazing brain being wired differently, she does odd things all the time, so sometimes it’s hard to catch things like this. After the wellness checkup with her PCP, he referred us to Vandy Kids to do an EEG.
When we arrived at Vandy Children’s Neuro in Franklin, our wait was relatively short. We dread waiting in waiting rooms. She wants to run all over the place, meet reluctant new friends and collect ALL the stickers and coloring pages that are available. Eva Rose is quite the overachiever, so she proceeded to have an episode in the waiting room minutes before they took her back. She slept in the room while the Nurse Practitioner took our information and explained the immediate options to us. We woke her up so the tech could hook her up with twenty-five electrodes, which we thought
would be a nightmare all on its own, but Eva Rose surprised us all. The tech was fast and phenomenal! The tech wrapped up her head so she wouldn’t mess with the electrodes. For Eva Rose, the key to a successful electrode placement is “Peppa Pig” and YouTube. Try to have something handy for your child to watch, play or listen to. I was able to crawl in the bed with her to soothe her if need be. The first test was the pinwheel test. This is where the child will blow on a pinwheel for three minutes. Then, they throw a Rave in the tiny room that will make a non-epileptic have a seizure (think strobe lights). This part was very, very hard for Eva Rose. We didn’t think we would get two minutes out of her let alone thirty. I believe they were able to record twenty-two minutes - YAY GOD! Bring a hat to put on your child or a hair tie to pull back the hair. It will be greasy and their hair will be wild when they are done. They use some sort of gel for the electrode connector. It rinses off easily with soap and warm water.
After this first EEG, we received the results the next day. They were able to capture enough on the EEG to move onto the next test, which was an MRI. This time, we arrived at Monroe Carrell Jr. in downtown Nashville. When you arrive, if you are going to Vandy, park in visitor or patient parking in the parking garage, it is free. Park on the second level, because you will need to walk across the bridge to enter the actual hospital. If you can’t find a spot, there are elevators that will take you to the second floor. Either way, you just need to get to the second floor to cross the bridge. The imagining center is located on the first floor of the hospital. You can either take the steps or an elevator down. There are several floor toys and books for your child in the lobby while you wait. Our wait time was super short for the MRI. There is also a beautiful Koi pond and courtyard to walk around in if your wait happens to be a bit longer than expected. They called her back very quickly and she was treated like a princess. They have all kinds of toys and markers that they can write on their bed sheets with! Eva Rose was in Heaven! The nurses will ask a bunch of questions, while you get your child in their hospital gown and non-slip socks. I asked for a pull-up just in case. The Anesthesiologist will come talk to you first and then take your child to get their “pictures” made. If your child has ASD, ask for the liquid cocktail before they put them under. It helps tremendously with calming them before they are put under and helps with the waking up process. It does take them a bit longer to wake up (which, sometimes is NOT conducive for the nursing staff), but it works wonders for a child with ASD. Take the time to let them wake up fully. I learned this the hard way during our second MRI. During the MRI, you can go enjoy a meal at two of the cafes in the hospital if you are at Vandy. You will give the nurse your number and they will call you when your child is done and waking up. My child LOVES anything that rolls, so she opted for the wheel ‘chariot’ to take her to the car. My advice here is to have your husband, partner or whoever is there with you to go grab the vehicle as soon as your child starts to wake up. The nurses want your child to drink and have a bite to eat before they will release them. Our exit after the first MRI went smoothly. The second one, not so much. I’ll explain that in a minute.
We received the results from the MRI two days later. It’s never what you want to hear, but we were prepared for the news. Eva Rose has a lesion in her left temporal lobe. I immediately think it’s the size of a watermelon. When in fact, it is the size of a small marble. For the first time in my life, I did NOT get online and research the crap out of this. I love the Lord and He has covered me with a sense of calm that I will never be able to explain. All I know is His Hand is all over this. The next test was the dreaded twenty-four hour EEG in the EMU (epilepsy monitoring unit) at Monroe Carrell Jr. Hospital at Vandy. We had a sweet friend reach out through Facebook (see, there are still some great things about Facebook) who works in the EEG field. She sent us a video to watch of a young girl who had gone through the twenty-four hour EEG process too. When she had hers done, there was no information for her family on what to expect while in the hospital. Her father filmed the entire experience for people like us who might feel like a fish out of water. The video was exactly what we needed to watch to prepare for the stay. The only thing it did not prepare us for was dealing with a child with ASD. It’s a lot to ask of a compliant child, let alone a child with ASD.
Since we are lucky enough to have this great hospital in our city, I only packed Eva Rose’s bag for the possible seven days she might be staying. We didn’t know what our room would look like and if all three of us could stay in there without killing each other. I packed an overnight bag, because I knew I could run home to grab whatever I needed.
Here are some great tips on what to pack for your child.
Because your child is literally tethered to the wall with a backpack that holds the box that all the wires are attached to, so they can freely move around the room, you need to pack clothes that are comfortable. I packed seven footless, zip-up pjs with house slippers. I did pack her outfits every day, so she felt like it was a new day, rather than staying in pjs for a week (although, who wouldn’t LOVE a week in pjs lol?!). Nothing can go over their heads, so think button up blouses or shirts. I packed three scarves to dress up her “helmet”. I believe we used one the first night and didn’t use another one the rest of the time. It’s cute, but not necessary. You can always color on the helmet or decorate it to make it fun. The room tends to get dirty real quick, so daily, I let her stand in the shower as I gave her a sponge bath. I did not let her sit down. It’s risky to even do this, but get help so you can help your child be as comfortable as possible. I don’t know about you, but I have to have clean feet before I go to bed. Each room has a thermostat in them. This is for your comfort and also can be used to trigger seizures. Sometimes, they will make the room extremely hot or cold. We didn’t have to do that, thank GOD, but be prepared just in case. Also, I would bring your own pillow and perhaps a blanket or two. The towels in the hospital are terrible, so bring a couple of towels. Again, I’m so grateful we live in town so we could make a quick trip home if we needed something.
This part is extremely important. I was freaking out thinking of my poor, little girl being tethered to the wall for a week. WHAT IN THE WORLD IS SHE GOING TO DO FOR A WEEK, other than think of 2,564 ways to bust out of that joint?!?!?! This was the question that ran rampant through my head for weeks prior to this stay. Eva Rose is super-duper energetic. I truly believe the phrases “bouncing off the walls” or “climbing the walls” were created because of her! She LOVES puzzles, coloring, LEGOS, iPad games and of course her favorite stories “Peppa Pig” and “Zig and Sharko”.
We bribed her with a Moana LEGO set that we gave her the first night after the electrodes were placed on her head. Don’t you dare think for one minute that you will not bribe your child… you will and should in cases like this. We had amazing family and friends bring things or send things for her to open each day. It was such a HUGE blessing. They say it takes a village to raise a child. In Eva Rose’s case, she has a booming city helping and we are beyond grateful for each of them.
At the hospital, they have Child Life Specialists who also walk around to the rooms and offer things for the kids to do - video games, play pretend toys, etc… I would highly recommend that you pack all the toys, books and games and bring something new out each day. With that being said, make sure you bring all your chargers too. We were able to connect our Apple TV to the room’s TV, so she had all her movies and shows (and so did we). Obviously, there was WiFi available. Activities are key!
As far as food is concerned, Eva Rose received three meals a day and we got one meal with each of hers.
The menu was extensive and honestly GREAT! We did bring snacks and ran down to the cafes a few times, but the food was surprisingly good. She’s not a picky eater, but a very clean eater. She hates fried foods, so I was pretty impressed with the options. There is a break room, if you will, that provides coffee, water and ice twenty-four/seven. Also, in that room there is a little freezer with ice cream - this saved the day/night on many occasions.
Now, this part is NOT what I like to write about, but it’s imperative, especially, if you have a child with ASD to be prepared. Our arrival time for check-in was 1:30p. We checked in downstairs on the first floor where she had her MRI (where we had such a great experience). One hour passed by, two hours passed by, and then, three. Eva Rose was losing her mind and so were we. I believe we called anyone and everyone who works at Vandy with any clout - that’s how desperate we were. Like I said way back at the beginning, there were a couple floor toys, Koi pond with a courtyard, and PRAISE GOD for the gorgeous train set someone built around the corner from the lobby. Once Eva Rose found the train set, she decided to do a photo shoot of it for the next hour.
If anyone from Vandy reads this blog post, PLEASE for the love of all things holy, fix this waiting issue. Set-up some text system or something. No one could give us any info on why it was taking so long, other than there wasn’t a bed available. We totally understood that, but we should have been able to go somewhere and wait until a room was available. Then, they could have texted us and we would have shown up happy and ready to get the party started. Once Eva Rose is torqued up, it takes a long time to bring her down. I’m not asking for special privileges because my child is autistic. I’m asking for support in situations like this to make this experience as pleasant as possible for all who are waiting. Children feed off each other, typical or atypical. When one kid loses it, more will follow. There was a lady in the lobby who had a very sick child with special needs. She had been waiting for a room since her check-in time at 9:15a. At 5p she finally got her room. The young mother hadn’t had anything to eat all day, because she didn’t want to leave in case they called her name. She didn’t have any help either. This is unacceptable. Period. As smart as everyone is under that roof, I can’t believe there isn’t a solution to this issue? I hope something is resolved very soon.
When we finally got to our room, we were pleasantly shocked. The room was spacious with a pullout bed. Linens, pillows and blankets are provided and they will bring you more if you need them. There is a TV and a mini fridge. The tech came in soon after we arrived to get Eva Rose hooked up. This time it was a bit different. They use a glue substance and a dryer to apply the electrodes since they could possibly be staying on her head for days. Our tech was great! Eva Rose did really well until the last six or seven electrodes. She turned into a child that was being held down by a priest and exorcised. We let her take a little break and drink some water. We had her do the countdown of the last electrodes, which helped so much.
She was not setup for success for the application of the electrodes, because of the insane wait time we had. She didn’t have any time to look around and get comfortable in the room, which is vital in her world. After she was hooked up and had her fun little backpack to carry around, she settled down for the night. Once we got to the room and finished with the hookup, we were so impressed with all the nurses and doctors. They truly made our six day stay the best it could have been. They ended up recording five seizures.
There is a process when your child has a seizure.
The first time is a bit overwhelming and then you get used to it. You will have a button to push, like you’re on Jeopardy, when your child has a seizure. A slew of humans descend super fast into the room to go through their checklist. You will also have a piece of paper where you document time and what the seizure looked like. That will be turned in as your homework when you are discharged. In the room, there is a camera that literally follows your child around the room the entire time.
Someone is monitoring and listening to your child the entire time, so don’t strip down naked unless you are in the bathroom with the door shut, FYI.
Once your child is set free from the bondage of the electrodes, the glue is still stuck to their head. No one gave us any instruction on how to take it off other than acetone. My husband did a little google search and found a concoction made by a hairdresser for this very thing. If your child is super young and isn’t able to keep this solution out of their eyes, don’t even try it. It needs to sit on their head for ten to fifteen minutes before you wash their hair like normal. It worked perfectly for Eva Rose.
- 5-7 Aspirin Crushed
- 1/2 C Warm Water
- 2 Good Squeezes of Shampoo
- 4 TBS of Witch Hazel
- Mix together and put on damp hair. Let sit for 10-15 minutes.
- Wash like normal.
- Use a fine tooth comb and brush through damp hair.
- Repeat if necessary.
After our lovely stay at Vandy, we had one more test the next week. Eva Rose needed a contrast MRI. Again, the wait time for the MRI was little to none. When they took us back, she got to ride a Frozen car back to the room. She was soooo excited! All was the same getting her ready for her “pictures”. They took her back and we went to grab a bite to eat. This MRI was a little longer because they were doing some extra things. When she woke up, she drank and ate immediately. The nurses asked her if she wanted to be carried or to ride on the wheelchair to the car and OF COURSE she chose the wheel “chariot’. So, it was me and the awesome nurse, that took care of Eva Rose, wheeling her out. This is the part where I should have allowed her to wake up slower than I did. She will be the cheapest date EVER! She was still pretty loopy, but kept jumping off the wheelchair and then realizing she couldn’t stand up. She did NOT want to listen or try to hold our hands and walk like a normal person. She was screaming from the top of her lungs, so pretty much, she was every super drunk person you’ve ever seen on lower broad wrapped up into forty-three pounds of red-head fury. It was not a pleasant experience for anyone. Note to self, let your child wake up slowly. Do NOT rush the process. The car ride home was an absolute disaster. I was begging to get pulled over, so I could go sleep for twenty-four hours in jail cell. That’s a joke… sort of. Once we got home, she was her normal self, all smiles and energy.
If you are still reading this, I hope it has helped you prepare for your stay in the EMU. It truly was a great experience once we got in the room. You are going to have moments, because we have those on the daily anyway. Just don’t forget to breathe or take a break. Good luck!!