Friday, March 10 Daytime update

• 6:30 am- As I walked in, Tom said that Maureen is having an episode. He had just pressed the button on Maureen's heart monitor, because the pulse went above 100. At 6:33 Tom administered 0.1 ml of Lorazepam. Maureen was asleep and it happened when she opened her eyes. She started twitching her arms and hands. Her eyes and jaw were normal. Pulse picked at 135 at 6:33. It slowly started going down in the next few minutes, but continued to be above 100 for the next seven minutes. At 6:40 am her pulse was 99 and slowly started to go down . By 6:50, it was in the 70-s. Twitching was the only symptom this morning besides the raised pulse. Oxygen was always in the mid 90-s. I wrote down everything in the symptom log.

• 7:00 am- Maureen is drifting off to sleep

• 7:30 am- Maureen is asleep .

• 8:00 am- Maureen is still sleeping. Pulse is 70, O2-95.

• 8:30 am- Maureen is asleep.

• 9:00 am- Maureen is still asleep.

• 9:30 am- Maureen opened her eyes for a few minutes, but looked sleepy and is drifting off to sleep again.

• 9:45 am- Maureen is awake now.

• 10:00 am- Maureen looks fully awake and we started the day. Her diaper was medium wet. Dalia and I cleaned and changed her. Applied Cavilon Barrier film and Cavilon cream. We next washed Maureen's upper body. We saw a slight redness under her right breast. After washing and drying, we applied a thin coat of nystatin. Finished dressing and headed to the kitchen.

• 10:15 am- Administered Levothyroxine with apple sauce.

• 10:20 am- Breakfast- because of the late start, we went with a smoothie for breakfast, 8 oz of prune juice with 1/2 cup of Miralax. Maureen coughed twice.

• Daily Miralax dosage- -/2 cup.

• 10:45 am- Administered Loratadin and Lisinopril with apple sauce.

• 10:50 am- Morning oral care. We reclined Maureen's chair after.

• 11:00 am- We sprayed saline mist in Maureen's nostrils because her nose was running.

• 11:30 am- Maureen is resting almost there, in the chair, closing her eyes at times. She has a low energy this morning, looks tired and sleepy. She had a lot of saliva that she couldn't get down, and phlegm. We used the suction machine a lot.

• 12:30 pm- Lunch- chicken noodle soup, shrimp salad, guacamole, bottle of coconut water. Maureen has very little energy to eat, looks very tired. She ate half of her lunch. At least she was able to finish the coconut water. One cough.

• 1:00 pm- Oral care.

• 1:15 pm- Nebulizer treatment with saline solution , because Maureen's nose was still running .

• 1:25 pm- We transferred Maureen to the bedroom for her only rest break today. Surprisingly, her diaper was still dry. We positioned Maureen on her right side at 1:35 pm.

• 3:00 pm- Maureen has been wide awake in bed. Her diaper was heavy wet. Dalia and I cleaned and changed her. Dressed and headed to the living room.

• 3:15 pm- Maureen looks energized and enjoying her fruit . She coughed once.

• The red spots on Maureen's face are fading.