August 25-26, 2020 "Seizure recovery"

6:32am

August 25, 2020 Rayden woke up early to a lady trying to take his blood again! What a way to wake someone up! Now he is screaming for his Daddy. He keeps digging in the EEG cap and wants it off his head REAL BAD!! I don't know why they can't make an exception for little kids. It's not like the nurse is in here helping calm him down or stopping him from falling off the bed or pulling the EEG leads out of his head. Rayden seems to have control of his hands and head today. He understands what's going on but he is so distraught. His attention span is about two seconds and it just seems like his insides are fidgety.

9:32am

9:30am The child life lady found him a tool box to play with and that made him smile. He wants to play but keeps falling over like a baby with no core strength. I have to sit with my arms protecting him so he doesn't fall over and hit his head on the bed rails. He will sit up and play for just a minute and then fall over and rest. He is in and out of it all day. He is so terribly tired that he just can't stay awake very long at all. Docs said his brain is damaged from the seizures. It has already been more than 24 hours so now they are saying it may take a few days to recover or he may never regain the abilities he had before! I'm not accepting that!!

The neurology team said they have not seen any more active seizures on the EEG so he can get that taken off today, THANK GOD!! They were going to do an MRI today but have decided that the benefit did not outweigh the risk. They did not want to sedate him again this close to his seizures if they can help it. It is so very hard to keep him distracted and keep his hands off his head. Dr. Shiloh-Malawsky said she believes the medication they chose for his epilepsy is correct because he hasn't had any more seizures and she sees a calming of brain activity on the EEG. At 10:04am I took this video of Rayden in my arms thanking everyone for their prayers. His speech is better than yesterday but still slurred. You can tell he is extremely tired too. It was a brief moment in his day that he wasn't screaming/crying for Daddy.

The next video was taken at 10:14am only 10 minutes later. He was crying and fixated on taking the EEG of his head again. His speech is still slurred but maybe you can get an idea of how hard this was. His mood swings were every few minutes and from one extreme to the other.

11:22

By 11:00am he had pulled the mesh toboggan off, the two leads on his chest monitoring his heart and even two of the wires from his head. He was screaming for me to leave and it was just unbearable for us both. I stepped out and told the nurse she HAD TO GET SOMEONE to get that EEG off his head NOW or I was going to scream myself. I tried every single thing I could to distract him. At 11:22am I even allowed him to order his own food. I didn't care if the people on the other line could understand him or not. I didn't care if they got mad. I needed some help distracting him. Fortunately the lady on the other end was so sweet. She talked to him a few minutes taking his mind off things. FINALLY, the people showed up to take the EEG off. They used cotton balls soaked in what smelled like alcohol to disconnect the leads. Rayden sat very still, although I had to hold onto him because he was falling over. He was so relieved when they got it all off. He didn't even care that there was tons of glue stuck in his hair.

1:16pm

12:30pm The speech lady came to watch him eat his lunch. He wanted to be unhooked from everything before he ate so she took it all off. That boy was so relieved! We moved him to the sofa bed to eat his lunch. He had a grilled cheese sandwich and ate it without any problems so she cleared him to eat anything he wanted.  He begged for Doritos, so guess what he got! A step in the right direction.

2:03pm

2:00pm The OT came and wanted to see if he could stand and walk. We tried but his feet were like jello. They kept slapping each other and not walking forward at all. He only made it about half way down the hall and we got a wagon to pull him the rest of the way. He had already lost his balance more than five times. He really got upset and angry! It was heartbreaking.

The docs came back in and told me to prepare for a couple more days in the hospital. They trained me on his rescue medicine and informed me that his seizure medicine must be taken on time twice a day. If he wasn't occupied he was crying.

3:25pm

I tried to soothe him by giving him a warm bath and washing his hair, which was difficult enough because he would start to fall over if I wasn't holding on to his back. It reminded me of when he was a little bitty baby. I allowed him to lay down on his belly in the water and pretend he was swimming. I asked the nurse to give him some fresh bed sheets in hopes that he would fall asleep. He curled up in bed and finally fell asleep around 3:25pm. I was so relieved. His body needs to rest so he heal.

He woke up around 7:00pm and ate his dinner. He had chicken nuggets, fries and orange gatorade (his favorites). Apparently the nurse had been talking to the doctors about how distraught he had been all day. They came in and asked if I thought he would heal faster at home where he wouldn't be so fixated on missing his Daddy and in a strange place. I agree this might rest his mind enough to heal so maybe he can go home tomorrow instead of a few more days.


This next video was taken at 7:24pm. It really shows how he still does NOT have control of his speech, head or body. Harrison sent Rayden some cute, silly pictures while he was sleeping to make him smile. I was so excited to see that he recognized his buddy and wanted to send him a thank you video clip. He loves his buddy, Harrison.

He only stayed awake an hour and a half. He was exhausted and wanted mommy to crawl in bed with him and have a "slumber party." He was fast asleep in minutes.








August 26, 2020 Rayden woke at 4:00 am ready to go!! He was talking clearly, swallowing, holding his head and body up. He ate most of his breakfast and actually asked to go walk. I was a little worried but knew we had to try. He stood up with persistence and started right out the door. He was wobbly but was taking his own steps. He walked all the way around the hall holding my hand only loosing his balance about five times. He even had a since of humor because he started acting like the kidnapping bracelet on his arm was a watch and he said "Hey Siri, what time is it?" The nurse got so tickled with him.

5:34am 

The doctor came in and saw the major improvements and agreed it would be a more rapid healing at home where he could settle his mind. So we packed up and called Daddy. When they made Michael leave the hospital he did not go far. He got a hotel room with his mom and dad down the street. He was probably more upset away from Rayden than I was trying to deal with it all. At least I could see him, Michael had to rely on my calling/texting him with information. He also was going through every single minute of that day trying to figure out what he did wrong that could have caused Rayden's seizure. He was so worried that Rayden would not regain his abilities and I know it was a trying time for him.

11:56am

Rayden was so excited to call Daddy and tell him he was ready to go. When he saw him waiting at the door he screamed, "DADDY!" It just echoed throughout the foyer. It sure did my heart good to see the two of them reunited. Rayden surprisingly did not sleep on the way home. He wanted some chips, so we stopped at a convenient store. He ate those chips like he hadn't eaten anything in months. It was kind of funny to see. When we first got him he was still wobbly on his feet and very, very tired. He didn't understand why he couldn't walk like he could before all this happened. He was getting very frustrated and fighting everything because he was so tired. He would slur his words badly when he got tired too. He ended up taking two naps that day. He was snappy with his mood swings just like in the hospital but the doctors told me to give him some time to heal. If it didn't correct itself then they would look at the medicine being the cause.