September 15 daytime update

• 6:35AM - Maureen is sleeping solidly.

• 6:45AM - She thrashed her legs and arms for a brief moment and went back to sleep

• 7:15AM - Maureen remains asleep.

• 7:45AM - Maureen began to thrash her legs a bit. Djon went into the bedroom to check on her. She is still asleep.

• 8:19AM - No change. Still sleeping.

• 8:21AM - I went into the bedroom to check on Maureen. She exhibited some of the signs that signal a seizure event: 1> Slightly clenched fists, 2> Occasional mouth twitch, 3> Occasional upper right arm spasm, 3> Unwillingness to take water from the mouth swab and 4> Unresponsiveness to verbal cues. Based on our collective experience, all of these signals were at the very low end of the scale. Djon and I did not even contemplate administering one or more doses of lorazepam.

• 8:35AM - Djon is sitting at Maureen's side in bed.

• 8:40AM - Maureen fell back asleep.

• 8:55AM - She is now starting to stir. We intend to take things slowly in terms of getting into our normal routine.

• 9:00AM - Maureen's eyes are now open. She is still somewhat foggy. Her right arm still spasms every once in a while. Refuses to take any water from the mouth swab. Every once in a while her face gets so red that she passes gas while coughing.

• Maureen began her day @ 9:50AM. She is alert and engaged. Nasal congestion is somewhat heavy. The diaper is heavy wet. Click/tap here to view a detailed overview of the process Djon and I use to get Maureen ready for the day.

• We examined the pressure ulcer on the lower part of Maureen's sacrum. Djon believes it continues to heal nicely. He detected the beginnings of new skin growth. The wound itself is now much more pink and less red. The wound remains at stage 2. It is definitely trending positively. See the attached image.

• Breakfast service began @ 10:17AM. Posture in the geri chair is almost perfect. We used the two green wedge pillows and the red couch pillow to set Maureen up perfectly. Click/tap here for detailed overview of the entire breakfast service process Djon and I use each day. Djon pureed the oatmeal and smashed the banana to make it easier for Maureen to chew and swallow.

• Daily MiraLAX dosage: None

• We did give Maureen 4 ounces of prune juice.

• 10:16AM - Djon administered a dose of Flonase into each nostril.

• General observations @ 10:44AM> Breakfast proceeded without a hitch. Maureen has good energy. He eyes are wide open. Engagement and communication are very good. Posture is excellent. She chewed and swallowed well—coughed only two times. The day, although delayed by two hours, has gotten off to a very good start.

• 10:49AM - Morning oral care routine.

• 10:54AM - We tilted the geri chair back one notch for Maureen's comfort and to relieve the stress off of her back.

• 10:55AM - Morning facial routine

• 11:51AM - I gave Maureen one swab of water as she was reclined in the geri chair. This precipitated one of the worst sustained coughing periods Djon and I have ever witness. Maureen had a continuous series of 6-7 hard/red face coughs in a period of 3-4 minutes. She also sneezed 4-5 times during this period. During this period, I kept Maureen's head perfectly upright while Djon used the suction machine to capture any phlegm or secretions that she coughed up. I must say it is one of the most disconcerting episodes I have evert witnessed. Djon checked the vital signs. All are normal. He also used the stethoscope to listen to Maureen's lungs. They are clear. Maureen did not aspirate any of the water.

• 11:57AM - Maureen is now sleeping in the geri chair.

• 12:08PM - Maureen is now awake.

• 12:20PM - We headed to the bedroom in advance of Rest Break #1. Diaper was dry. Djon and I placed Maureen on her right side.

• 12:27PM - Rest Break #1 begins.

• 1:35PM - Rest Break #1 concludes. Diaper was medium wet. Djon and I cleaned and changed Maureen. We then proceeded to the kitchen for lunch.

• 1:48PM - Lunch | Djon prepared a serving of egg salad on a lightly toasted piece of sourdough bread, 1/4 bowl of Chicken Tortilla soup and a small serving of the spinach medley.

• 2:32PM - Afternoon oral care

• 3:05PM - We headed to the bedroom for Rest Break #2. Diaper was medium wet. Djon and I cleaned and changed Maureen. We then placed Maureen on her left side.

• 3:18PM - Rest Break #2 begins.

• 3:45PM - Rest Break #2 concludes. Diaper was dry. We got Maureen dressed and then headed to the front room.

• 3:55PM - Maureen is in the front room resting in her lift recliner.

• 6:10PM - Tom and I transported Maureen to the bedroom for a clean & change. Diaper was light wet. We then headed to the kitchen for dinner.

• 6:25PM - Dinner | Carolyn brought dinner to the house. Maureen enjoyed a serving of salmon, a serving of vegetable medley and a serving of roasted potatoes from Pazzi Di Pizza.

• 7:35pm 5mg Olanzapine with applesauce and 10mL Vimpat.

• 7:45pm Oral care.

• 7:55pm Night time facial routine.

• 8:00PM - Tom and I placed Maureen in bed. She was sleeping before we could set her down for the evening. The diaper was dry. We set Maureen on her right side.

• 8:10PM - Maureen is sleeping..

Daily Cough Count

​Breakfast	Smoothie	​Lunch	​Fruit Snack	​Other	Red Face
2	N/A	6	N/A	16	13