Remember when I posted about Theo's "episodes" and how the doctor didn't think they were seizures? BUT he did schedule an EEG just to double check? And then Theo had an EEG and it showed no seizures? Remember all of that? WELL... turns out they are seizures.
On Wednesday, February 23rd, Josh, Theo and I drove down to Peoria to see the Neurologist. Right before we saw the doctor, Theo had an episode. They only last 1-3 seconds, so they are easy to miss. I was really hoping Theo would have one in front of the Neurologist, so we could get his opinion on what they are. While we were talking to the Neurologist and going over Theo's medical history, Theo had an episode. I said, "that's it!" and the doctor immediately ran over to Theo, examined him, and called it a seizure. Okay, okay! We have an answer! Finally! Theo had two more in front of the Neurologist and he said that due to the frequency of the seizures he was going to admit Theo to the hospital immediately.
The nurse took Theo and Josh to the Emergency Department (ED) and got them settled in there while I made the two hour drive home to get our things.
[CT of Theo's head to check his shunt]
[X-Rays to check out everything else]
They also started an IV and "loaded" (high dose) him with Levetiracetam (Keppra). The doctor also ordered blood work to check and see if there was anything in there (low blood sugar, high salt content, etc) that would cause seizures.
I drove the two hours home (stopping briefly in Ottawa to get Theo's toy that he left behind during a previous doctors appointment), pack a bag for myself, Josh, and Theo, and then turned around and drove the two hours back to Peoria. Luckily, I had a lot of podcast to listen to and a lot of Marco Polos to catch up on, so the drive wasn't too bad.
I made it back to the hospital at 7:00 PM and headed down to the ED to find Josh and Theo. They were in a private room while they waited for a room to open up in Peds General (floor 6). Shortly after I arrived a nurse came in and told us a room had opened up on the 6th floor and they would move us up there shortly. YAY!
After we got settled in upstairs I headed to the hotel for the night while Josh stayed with Theo. That night the nurse gave him a "maintenance" Keppra dose and the techs came in and hooked Theo up to the EEG.
The next morning (February 24th) I headed back to the hospital and found Josh and Theo in their room. Later that morning the Neurologist Resident came to visit. While he was examining Theo, Theo had multiple seizures. They are pretty mild, but the doctors aren't happy so they gave him another "load" of Keppra.
The Neurologist (Dr. Kahn) came in and talked to us. At first he said that Theo’s seizures physically look like focal seizures, but the EEG is showing multi-focal seizures (generalized epilepsy). But upon closer examination they believe these are focal seizures that start in the right frontal and temporal lobes, but they spread quickly through the brain (which makes them appear multi-focal). The Neurologist said they need to stop these focal seizures before they cause large general seizures that could cause a lot of damage or be life threatening.
[So many different ways to play Peek a Boo Barn]
Theo went about 4 hours without a seizure. The Neurologist came back and said he’s been looking over Theo’s EEG results and he believes that these are focal seizures that are originating in the right frontal and temporal lobes. They are going to talk to Neurosurgery and see if they think there may be an issue with the shunt (it’s located in the right side). The Neurologist also saw a little fluid buildup in the front of the right lobe and they want to make sure that that is not related to the seizures and that it’s not hurting Theo.
The Neurosurgeon resident stopped by to check Theo's shunt and to talk to us about his CT scan. He said that the shunt looks good and they see no reason why it would be causing the seizures.
Since Neurosurgery moved Theo’s EEG dressing to find the shunt, we thought it would be a good idea to redo the dressing before bed. The EEG nurse came by and said it looked good so she wasn’t going to redress it.
[View from our room right before they moved us to another room on the other side of the ward]
The next morning (February 25th) Theo and I were woken up at 3:00 AM, by a nurse who thought that was a good time to redo Theo's EEG head wrap. UGH! Of course, Theo did not go back to sleep. From 3:00 AM to 6:00 AM he was awake, very tired, very crabby, and had a lot of seizures.
Neurosurgery (Resident, Dr Lin, and Nurse Jenna) came by and said that the shunt placement looks good and it’s still functioning. So these seizures aren’t caused by any issue on their end.
[Our hospital is a Catholic hospital, so we get a lot of prayers!]
[View from our new room. It's not as exciting as watching the helicopters land, but we'll be okay.]
[More Peek a Boo Barn]
[View of the hospital from the parking garage. I try and walk up and down the parking deck stairs multiple times a day.]
Neurologist (Dr Kahn) came by and said that they are going to add another anti-seizure medication to the Keppra. He said that they can stop the EEG since we are able to recognize Theo’s seizures accurately and he appears to only be having them during the day. If Theo has a seizure lasting more than 2 minutes they will give him Ativan. And if he has more then 3-4 in an hour we need to let the doctor know.
They came and removed the EEG and gave Theo a "load" of Valproic Acid (Depakene). Theo took a nap and had a seizure at 12:11, 14:44, 14:56, 18:03, 18:15.
[We used a washing cap to clean Theo's hair after getting the electrodes off]
We gave Theo a sponge bath (which he seemed to like) and they gave him a dose of Keppra at 6:00 PM. He was pretty tired after that and fell asleep around 8:00 PM.
[All nice and clean and ready for bed]
Seizures Today:
04:59
05:08
05:12
05:26
05:43
06:59
07:55
08:55
09:28
12:24
12:28
12:34
13:31
14:05
18:00
19:10
19:27
Sunday, February 26th
Theo was woken up around 4:15 AM and had eight seizures in 20 minutes (a "cluster").
The Neurologist (Dr Michael Schwabe - Epilepsy specialist) came to see us and said they were going to start giving Theo his Depakote via G-tube and they were going to increase frequency from 2-3 times a day. He also talked to us about the seizure "cluster" that Theo had that morning. If Theo had multiple seizures close together this is called a "cluster" and it is dangerous and can lead to a bigger and more dangerous seizure. If Theo has 10 seizures in 15 minutes we need to let the doctors know and they will give him emergency medication (Ativan).
I asked if it was a good idea to give Theo medication in the night to help him get through the morning because that seems to be the time of day when he has the most seizures. Dr Schwabe decided that was a good idea and prescribed him a third anti-seizure medication.
This hospital stay consisted of a lot of "waiting and seeing," which happens when you are trying to get medication correct. Dr Kahn said that he wants to wait until Theo has been seizure free for 12-24 hours before discharge. But Dr. Schwabe said that "epilepsy is an outpatient disorder" and he feels like we should be able to go home sooner. Either way we are being patient and will not push the doctors for an early release. I think that will just increase our chances of another hospital admittance.
[Theo's aids at school sent him some videos to watch. Isn't that so sweet?!]
[I had a lot of time to read since Theo was taking a lot of naps]
[Still able to grab the beard]
[He cuddles with his foot when he sleeps]
[More naps!]
I bought Theo his unicorn when I was on one of my long walks through the hospital. I thought she was ADORABLE, but Theo's not into her.
That afternoon Josh's co-worker, Lucas, drove all the way down to Peoria to pick him up. Josh really needed to go back to work and we are very grateful to Lucas for making the long drive! And we are very grateful to Josh for working so hard!
Seizures Today:
04:47
04:48
04:50
04:53
04:55
04:58
05:02
05:07
05:40
08:19
09:05
10:00
11:16
12:19
15:32
17:41
Monday, February 28th:
This morning was SO MUCH BETTER! The doctor gave orders that we were not to be disturbed during the night and to not bother Theo until after he woke up on his own. We were hoping that if Theo wasn't overly tired and overly stimulated that he wouldn't have so many seizures in the morning and we were right!
**SIDE NOTE: Theo did have a few seizures close together (not anywhere near the 10 in 15 minutes) after he woke up so I tried to call our nurse to let her know, but instead I accidentally alerted the entire floor and I had 10 nurses show up at our door. It's good to know they take seizures seriously and can be there in a jiffy if things go south.
Theo and I went for a walk around the floor today and ended up running into the Neurologist. He said he was glad to see Theo's numbers going down (yesterday he had 8 seizures in 20 minutes, today he had 4 in 30 minutes). He wants to get these "clusters" under control, but he feels that we can be discharged tomorrow as long as we continue to report numbers to the team and stay on top of Theo's medications.
[Did you know there are six different ways to play Peek a Boo Barn?!]
February 28th is also Rare Disease Day
Seizures Today:
04:59
05:10
05:14
05:31
05:38
05:55
08:00
08:24
08:55
09:35
09:55
12:15 - 4 seconds*
18:30
19:15
*Theo's seizures usually only last 1-2 seconds, I make a note if they are longer then that.
Tuesday, March 1, 2022
Discharge Day!
The nurses did not disturb us again in the morning. Theo was up early, but didn’t have very many seizures (4 in 5 hours).
Dr. Schwabe stopped by with his Resident and they are both very happy with how Theo's morning went. They said they would send in his discharge papers and we could go home this afternoon!
It took a while to get discharged, but the floor doctors were very helpful and great. They had no problem filling out Theo's school's "Seizure Action Plan," making sure we were comfortable with all of his new medications, and they gave us a discharge letter so Theo could go back to therapy.
This was definitely one of our more boring hospital stays, but I will take that any day over the exciting hospital visits. A few good things did come out of this hospital visit: we learned that Theo is having seizures, he does not have them while he is sleeping, and they can be partly controlled with medication and by removing Theo from the stimulus that is overwhelming him. We have a long road a head of us. We want to find a healthy balance between seizures and medicating Theo so much that he just sleeps. We hope to someday control these seizures without so much medication, but only time will tell.
And hey! We are just in time for Epilepsy Awareness Month.
I just want to thank everyone for the thoughts, prayers, and good vibes. We had a great team of doctors and nurses taking care of us.
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