Today was Mother’s Day. It was a quiet day because the kids were with Grandma and Grandpa. That night they visited me in the hospital. The kids gave me lots of cards and 3 beautiful plants. Tavis got me a wheelchair and we went outside in the courtyard to enjoy some time in the garden with our Subway sandwiches. It was a short visit but the highlight of my entire weekend.
Today I also got a wheelchair so my husband was able to take me outside to the garden. It was my first time out of the room since I was admitted.
A few friends came to visit today. I had a few episodes but only when I moved suddenly for hugs or to grab something. It was great to have visitors because my husband was able to relax a bit. That night I took 1/4 of a sleeping pill and went to bed. It was my worst night at the hospital and the last night I took a sleeping pill.
This morning the hospitalist came to check on me. He reported that all test results from the hospital have come back normal. He let me know that I would see a psychiatrist and that the only test really left from a medical point is the lumbar puncture to rule out any infections in my body. We stopped recording every episode since the doctors didn’t seem too interested in them.
Later that morning my husband came to visit. While he was in the room a psychiatrist came to see us. She went over my history and looked for any signs of Depression or Stress to report to her team. She said there really wasn’t much that she could tell but another thing they are looking at is Cataplexy which is a sleep related disorder.
After school the kids came to visit briefly on their way to Vancouver Island. It was great to see them. I had an episode while they were at the hospital but by now we had determined that by resting I was able to minimize the number of episodes I was having.
Our neurologist came out to visit after 8:00pm. He told me he wanted to do a lumbar puncture to rule out infection. We were hoping to have the test early next week.
That night I took 1/2 a sleeping pill to help rule out sleep disorders. The next morning I woke up at 6:30, then 7:30, then 9:30. I was extremely tired all morning and which was most likely due to the sleeping pill.
I had a new nurse who helped me get out of bed on my own and she stayed with me for 30 minutes while I waited through the episodes. It was the first time a nurse asked me what I wanted to do and helped me do it. I walked to the bathroom to brush my teeth and clean up. After I sat by the window to try and keep myself upright. I had several episodes but I pushed through.
My first episode of the day was around 8:30am when I tried to sit up. I went out but was able to talk and move almost immediately. I went out again 2 minutes later but was able to move again within minutes. After 5 minutes I had full control of my body again. We were starting to think that movement was causing the episodes.
At 11:00am I was talking to the school Secretary to let the kids teachers know that I was okay but still in the hospital. Part way through the conversation I went out. It took 3 minutes before I could open my eyes or speak. I tried to fight it again and it took 10 minutes to regain full movement.
My husband went home to rest around noon and my Mom stayed with me. I had another short episode at 2:15. The doctor came at 2:30 with CT results and all tests so far have come back normal. I have 2 stones in my gall bladder but that is all that was found.
Around 3:00pm I had the holter monitor strapped to me. It is like the ECG but monitors over 24 hour period. At 3:10 I had an episode and another one at 3:15 that lasted 10 minutes. At 3:50 I had another episode that lasted less than a minute and then went out again for 5 minutes. I had another episode at 3:55 which lasted 20 minutes. As I was coming out of it I had more blood work done to test electrolytes.
My brother came for a visit today as well. It was great to see him even though it was a short visit.
At 6:30 I had 2 five-minute episodes and again at 7:20. At 8:30 we were playing another game on the tablet when I had another 2 episodes lasting about 5 minutes each. My husband stayed until 9:00pm and then decided to go home and get some sleep. My roommates said they would look after me while while my husband was away.
We woke up at 6:30am. I didn’t think I had any episodes through the night but shortly after I fell into one that lasted almost 15 minutes.
Just before 8:30am I felt another one coming on. I called my husband and he observed me. I could still speak lightly and move for another 3 or 4 minutes before I fell into a full episode. About 5 minutes later I could speak again but when the nurse came in I still couldn’t move. She took my vitals. About 15 minutes later I was able to move again. I had an annoying cough that scared me because I was worried I wouldn’t be able to breathe with the phlegm in my throat.
I had another episode at 10:20am when my youngest sone came to visit. He lied down next to me and lowered my bed. I was able to speak after 2 minutes but it took another 10 minutes before i could move my arms and legs.
My husband went home around noon to get some sleep and returned around 3:30. While he was gone I had a 10-minute episode around 12:30. I had another one around 2:00 and then went in for my EEG around 2:15. During the EEG I had a complete episode which lasted around 5-10 minutes. Shortly after I got back my husband was there with coffee for two of my roommates.
At 3:15 we had just finished playing a board game on the tablet and I had another 2 episodes back to back. The first one lasted only a few minutes and I could move after 10 minutes. Then I went back out and was able to move again after 5 minutes.
An hour later I was told I was going for a CT of my organs (this time with contrast). The nurse tried to put a second IV in me but failed. I ended up having a panic attack (sweating, nausea, shaking). It could have been due to the tensor on my arm being too tight. In the end we did not get another one in and the CT technician said the small one already in was sufficient.
The episodes are now lasting approximately 5 minutes. I had another at 5:00, 5:10, 5:40, 5:45 (lasted 15 minutes), 7:10, 7:20, 8:10, 8:40., 9:00, and 9:15.
At 9:30 I got up to go to the bathroom and collapsed just outside the door. My husband caught me and I was able to get up after a few minutes, go pee, then went to bed and fell asleep for the night.
My husband crawled into bed with me and slept by my side all night again.