Monday, January 2nd:
We had a pretty lazy day at home. We spent the day packing, playing, and getting haircuts!
[Theo does not like to color]
[Theo was too tired to lift his head and look at his game while he was in his stander]
Haircuts - Before:
Haircuts - During:
Haircuts - After:
I miss the little back and side curls, but they'll grow back!
Theo had three seizures today.
Tuesday, January 3rd:
We didn't have to be at Lurie's until 1:45 PM, but it was rainy and foggy so we left the house super early. Like super early. We were 45 minutes early to Theo's appointment. Oh well, I'd rather be annoyingly early than late.
We parked the van, checked in at the front desk, took the elevator to the 11th floor, transferred to another elevator, and took that to the 19th floor.
The hospital is huge, but there are signs and dots on the floor to follow which is very helpful.
We checked in at the Epilepsy Monitoring Unit (EMU) and were shown to our room.
[What a nice view!]
Josh then took Theo to get the electrodes put on while I unpacked.
Theo returned to the room and we met with the Epilepsy Nurse Practitioners while the techs hooked Theo up to the computer. They then used a strobe light to try to trigger seizures. Once the techs were satisfied that every thing was working correctly, we went over Theo's history with the nurses. They told us to push a button when we saw a seizure and we could tell the camera what we were seeing (they are always recording and can see and hear us).
[Trying to trigger a seizure with strobe lights]
Theo had two seizures that we saw. Each time we pressed the button the nurses came running in and made sure everything was okay.
For dinner Josh walked over to Gino's East (we could literally see the sign from Theo's room). We got a small meat pizza, mozzarella sticks, and a slice of tiramisu cheesecake. The pizza was fine. Giordano's is better. But the tiramisu cheesecake was delicious!
We had a few volunteers from the hospital stop by the room to make sure we were okay. They offered to bring toys, showed us how to use the TV, and seemed a bit confused when we told them we were good. Even though this was our first stay at THIS hospital we have over 50 nights at hospital's under our belts. I appreciate that they wanted us to be comfortable 🙂 We had plenty of toys, games, and videos from cousins (thanks Porter and Kenna) to keep Theo entertained.
We decide early on that Josh would stay with Theo the first night and I would go home. Without traffic it only takes an hour to get home from the hospital. I'd rather make the drive and sleep in my own bed than stay in a hotel.
Wednesday, January 4th:
Theo had a great night and slept really well. I waited until after rush hour to drive into the city.
Around noon the Epilepsy group (two doctors and two nurses) just came in and went over Theo’s EEG. We only saw two seizures yesterday, but the EEG picked up over 20 in just a few hours. So the meds are making them less intense, but they are still happening. They want to keep us here for another night, so they can continue to collect more data. They are not able to pin point exactly where the seizures are starting, but they quickly spread throughout the entire brain. So they are classifying the seizures as tonic generalized seizures. It looks like the VNS (which targets the entire brain) is going to be the best solution.
Back in February 2022 when Theo had his long hospital stay at OSF, they classified his seizures as focal tonic secondary generalized seizures. They believed his seizures started in one part of his brain and then spread through out the brain. I'm curious if the seizures have changed or if the doctors are interpreting the EEGs differently. I called OSF and they are sending us his EEG on a disk. I told the doctors and they are excited to see his other EEG. The hospital in Peoria is also going to send them the images from his last two MRI's and angiograms. They already have the reports, but not the actual images.
Later that afternoon, Dr Garcia Pierce came to see us. She showed us part of Theo's EEG and a video of some of his seizures. Most of the seizures are super small and you can just barely see his head turn slightly to the left. She is going to adjust his meds again and they are going to discuss adding in a new medication to help with the seizures. We are still going to have the MRI and PET in February and then Dr Garcia Pierce will present their findings to the team. She agrees with the Epilepsy group and thinks the VNS will be the best thing for Theo.
We are going to stay here one more night and hopefully go home tomorrow.
For dinner we got Ramen, pot stickers, and donuts! It was all delicious!
Josh drove home after dinner, Theo went to bed, and I spend the next few hours reading my book before I went to sleep on the couch.
Thursday, January 5th
Theo woke up around 3:30 AM and decided to sing me a song about his best friend, "Dada." It was a very nice song, but it was too early and I told him to go back to sleep. He sang on and off until 4:30 AM when we decided to get up.
Then around 7:00 AM Theo decided to take a long nap, which game me more time to read.
Josh waited until after rush hour and got back to the hospital around 9:30 AM.
A couple hours later the Epilepsy team came in to see us. They told us Theo is having seizures while he is sleeping, but they are so small that they barely register on the EEG (kinda like a little "blip") and there is no physical response. He is having about two seizures an hour, but had 9 seizures in one hour. They last 5 to 20 seconds and some start on the left side of his brain and spread and some start on the right side of his brain and spread.
The doctors approved us to be discharged and they were happy with all the data they collected.
They are changing up some of his medication doses since it may be a few months before he can get surgery. And even after surgery it can take a while (6 months) to start to really affect him. We will see them again in February for the MRI, PET scan, and bloodwork. Theo’s doctor will also be looking further into other cases where the kids had an embolized VOGM and had a VNS placed. She doesn’t believe the platinum coils will negatively impact the VNS, but she's going to do some research. She’ll present all this data to the team after the MRI and PET scan.
[The tiny, tight waves in the middle of the chart is a seizure]
The Epilepsy Specialist will also update Theo's Seizure Action Plan (SAP). The emergency meds should be administered if Theo had a tonic-clonic seizure lasting more then 5 minutes (that's the same as his last SAP). The emergency meds should also be administered if Theo has a cluster of seizures and he does not return to baseline between each seizure. I think this is a much better plan because it focuses more on how Theo is reacting to the seizures rather than how many seizures he is having.
We packed our bags, got Theo's electrodes removed (that was the worse part), and headed home.
On the way home we stopped by Walgreens so Theo could get his COVID booster shot. He didn't even cry! Such a brave boy! I think he was showing off to the cute doctor!
Friday, January 6th:
I went and got my allergy shots, went to Target, and made buckeyes. This time I let them toughen in the fridge over night before dipping them in the chocolate. It worked a lot better!
[Fourth from the bottom!]
On Sunday we made a family outing to Costco. Theo was very happy to get out of the house for a bit! He is so ready to go back to school tomorrow!
It's January 2023, so it's time to file Theo's 2022 doctor appointment notes in my file box.
Unfortunately the Packers will not be going to the Playoffs this year. Josh has agreed to join me and root for the Chargers!
Theo had one "observable" seizure on Friday, Saturday, and Sunday. We are going to continue to keep track of Theo's observable seizures, even though we know he is having a lot more that we can't see.
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