Wednesday March 3, 2023 Daytime summary

6:30 am- Maureen was awake when I walked in. She is laying on her right side, receptive to water sips via swab, calm and relaxed.

• 7:15 am- Maureen is in and out of sleep.

• 8:00 am- Maureen is still in and out of sleep.

• 8:30 am- Maureen is still in and out of sleep.

• 8:36 - Maureen woke up and opened her eyes wide. There was no twitching or any other signs of an episode. We placed the oxymeter immediately. Her pulse was 82 . Her eyes were blinking, but still wide open. At 8:38 the pulse started to go up above 100. Pressed the button on the heart monitor. At 8:40 pulse picked 134. Administered 0.1 ml of Lorazepam at 8:41. After a couple of minutes it started slowly to come down. At 8:46 it was in the upper 80's. Oxygen was always in the 93-95 range.

• 9:00 am- Maureen is calm and relaxed, Pulse is 84.

• 9:45 am- Maureen was awake enough and we started the day. Her diaper was light wet. Dalia and I cleaned and changed her. Applied Cavilon Barrier film and Cavilon cream. The abdominal redness was still visible, we cleaned, dried and applied Nystatin. It looks better than yesterday. We saw a slight redness under her right breast. After washing upper body, we dried and applied Nystatin there. Finished dressing and headed to the kitchen.

• 10:00 am- Breakfast- because of the late start we went with a full smoothie for breakfast, 8 oz of prune juice with 1/4 cup of Miralax. Maureen coughed twice. We reclined the chair because of Maureen's head leaning forward and down.

• Daily Miralax dosage- 1/4 cup.

• 10:30 am- Administered Lisinopril with apple sauce.

• 10:32 am- Morning oral care.

• 10:35 am- Facial routine.

• Maureen barely had the energy to have her smoothie. Her eyes were closing. She looks tired and sleepy.

• 11:00 am- Maureen is sleeping in the chair.

• 11:38 am- Maureen woke up and her eyes were wide open. He jaw and hands clenched and she was twitching a little. He pulse started to go up. At 11:40 am it went above 100. I pressed the button on the heart monitor. It stayed between 105-110 for a few minutes, then picked quickly at 120 and started slowly to go down. The whole episode lasted about 10 minutes. At 11:50 her pulse was already in the 70's. No more twitching and clenching, eyes look normal, but tired . I wrote it down in the symptom log.

• 12:00 pm- Maureen is closing her eyes sometimes.

• 12:20 pm- Maureen is awake .

• 12:30 pm Lunch- vegetable soup, ham salad, steamed red beets, bottle of coconut water. Maureen didn't have much energy while eating. She wasn't receptive even to coconut water, kept holding it in her mouth. Two coughs during lunch.

• 12:55 pm- Oral care.

• 1:05 pm- We transferred Maureen to the bedroom for her rest break. Diaper was dry. That's the longest time we've seen her with dry diaper during the day . Positioned Maureen on her left side at 1:15.

• 2:45 pm- The extended rest break ends. Maureen's diaper was medium wet with a large formed bowel movement. Dalia and I cleaned and changed her. Dressed and headed to the front room.

• 3: 05 pm- Fresh fruit snack. Maureen has a little more energy now than during lunch time. No coughs.

• 3:20 pm- Maureen closed her eyes right after she finished the fruit. It was unusual day today, having two mild episodes. She was tired, sleepy, very quiet. Lunch was challenging, she had no energy for it, couldn't keep her head up.