Claudia began the day with mom this morning. She wrote that mom was bright eyed and alert and talking alot when she arrived. She did mom's physical therapy/range of motion exercises. Claudia showed mom the family photos but mom couldn’t name anyone and kept saying, "I don't know." She also tried to put mom’s legs on the 10 inch ball—alternately---to do leg lifts, and though mom couldn't lift her legs, she did move her right foot as if she knew something was supposed to happen with that foot/leg. It was as if she understood what she had to do. Her left hand was pliable and loose. When Claudia said she was leaving, mom said, "NO" and Claudia told her, "Sorry mom, I have to get to work." Claudia also had to move mom in the bed with the help of 2 men who work there because mom was all tilted over to the side in the bed (maybe she is moving around alot again).
Claudia also talked to the head of respiratory who is maintaining that he feels mom has Central Sleep Apnea and not obstructive sleep apnea. The difference between the 2 is that CSA involves damage to the part of the brain that tells a person to breathe. This doesn’t make sense though because the occurrence only happens at night. He said that mom is improving with the episodes of apnea at night. He studied her charts (hmmm….coincidently the day after Claudia and I went to the Building Administrator….hmmm)…anyway, after reviewing her charts, he determined that mom is, indeed, showing significant progress with the apnea at night and is, in fact, down to only 1 episode a night. The head of respiratory feels and believes that, although he thinks mom has CSA, her brain is mending in a way that is compensating for the inability to maintain breathing at night. He is not sure if mom’s brain will stay this way (therefore requiring her to stay on a vent at night forever) or if mom’s brain will mend fully (meaning that she will get off the vent forever). PRAY SHE GETS OFF THIS VENT!!!! PLEASE!! Thanks. Anyway, I am wondering how mom would have been off the vent totally for a full week (back in December) but NOW went backwards to having CSA????? CSA is not, to my knowledge, something that just happens out of nowhere or as part of old age….but who knows? I didn’t look it up yet in that context. As far as I know, CSA happens as a result of brain damage. So if mom was off the vent for a week in December, I don’t think she has CSA. I think that she has OSA (Obstructive sleep apnea)—which is what mom always had (due to her weight and other things like blood pressure…) which is what mom’s neurologist thinks as well. Ultimately, God is in control---so let’s just collectively beckon Him on mom’s behalf again! Mom's roommate is not doing well...she could use some prayer. She is old and very ill. I had the opportunity to pray with her again today.
Some newcomers to the blog have asked about our communication system regarding mom’s state of alertness…here’s what we do. When mom was in a coma, we had developed 2 charts. One chart, recorded mom’s motions (whether she opened her eyes, moved a limb…) and how long the motions lasted. We logged this information in order to see the subtle but steady progress mom was making. We no longer have need for this chart now. PTL. The other chart records mom’s state of alertness (1=awake, 2=asleep, 3=totally out of it no waking her up). On this same chart, we record the time of day, who is with mom (which family member or friend), and what activities we did with mom (so that we don’t repeat activities, other than range of motion exercises). Sometimes, we even write mom’s care on there by staff.
Ok, so when I arrived to be with mom around 10:30 a.m., she was asleep. I said hello and talked to her, but her eyes remained closed. I opened her lids but she was asleep (when she is faking or confused, when you open her lids, her eyes look right at you---when she is asleep, her eyes roll back in her head). I waited and let her sleep and prepared to work with her. One of the things I did then was to put some cinnamon oil on the lightbulb above her bed (said to make a person more alert), and I also put some frankincense on her temples (said to give mental clarity). About 15 minutes later, I tried to wake her again and she was awake. She answered, “Good” when I asked how she was. She mouthed a few phrases too. Then mom’s nurse came to do trach care and she remained awake through it all. When that was finished, I tried to do the Mega Blocks with mom (huge, oversized Legos) but mom fell asleep again. I woke her and put the IPAD on along with the headphones---a book on tape, “Testimony,” the closest thing to a mystery that I had on there. I figured it might wake mom up too. It didn’t. Or at least, she didn’t open her eyes---she squinted them a lot though. I tried writing on the dry erase board with mom next…no luck there either. Mom had no interest and fell back to sleep again. Mom’s friend, Florence, came to see her today too. Mom slept through almost all of the visit. Just as Florence was leaving, mom woke up. I tried to do some pegs and pegboard with her, but she needed hand over hand assistance to put 2 in the board and she couldn’t pull either of them out either. Her motivation was really low today. I put some “Electric Company” shows on the IPAD with the headphones and let mom listen and watch for a while. She fell asleep shortly after it started. Dad arrived around 4 p.m. and mom smirked and smiled and woke up when he said hello! Her evening CNA said that mom is up all night and that, last night when she came in, mom was awake and asked her, “Hey, what time is it?” The CNA said that mom was missing us and looking forward to seeing us. I spoke to the nutritionist and asked about having mom’s feeding (liquid…through the G-Tube) take place during the day and not at night. Right now, mom’s feeding takes 12 hours on and off throughout the night. It is a high protein solution so we are thinking that it is keeping her up at night possibly. The nutritionist said that mom has lost 30 lbs. since she is here and needs to lose more weight so she wants to cut some of mom’s feeding back (which I approved) and the nutritionist also said that mom’s feeding time switch will occur effective tomorrow. She will get ½ her feeding tonight and then the switch will be made as of tomorrow morning. Shortly after dad arrived, mom was put to bed and changed and fell asleep again. Dad and I left to get some dinner and when we returned, mom's eyes were squinty shut---I lifted the lids and she stared at us. I had noticed earlier in the day that mom's left eye was puffy near the nose at the top of the eyelid and a little black and blue looking so I asked the night nurse to look at it for us. He said that it was probably an edema in the lid from leaning to the side so much. Could be. He said they'd watch it. I left and dad put mom to bed. Con will be doing the blog over the weekend (Saturday, Sunday, and Monday) because Claudia, Lenny and I are going upstate for a long weekend.
"We know that we have passed from death to life, because we love one another." 1 John 3:14
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