Claudia began the day with mom in the usual way with her full range of motion/physical therapy exercises. Mom was “out like a light” as Claudia reported. Claudia said that she tried to get mom to wake up but couldn’t rouse her---her limbs were dead weight so Claudia played some music for mom to listen to. Carmine came and worked with mom again today---he is such a life-saver and wonderful, giving man. Our family cannot thank him enough for what he is doing for mom. His kindness makes me cry even as I write this. Dad and Aunt Sophie came to see mom next. Dad said that he did mom’s physical therapy/range of motion exercises again and tried to work with arm strengthening using the orange scrunchy tube. Dad said that mom predominantly slept today though as well. When I came to see mom later in the afternoon, she was sound asleep and in bed. The nurse told me that a red mark on mom’s tail bone was noticed but the wound nurse said it isn’t a pressure sore—thank God!! They are treating it with cream and expect it to be gone in a few days or so. The facility doctor came and told me he ordered the CAT Scan for mom to rule out a sinus infection and that, if mom shows signs of an infection, they will treat her here rather than send her to an ENT as mom’s neurologist prescribed. We will wait to see what the results show before deciding what to do for mom and how. I noticed that she was still scrunching up her eyes a lot on and off too again tonight. This is 3 nights in a row. I am wondering if some cream is accidently getting in her eyes when she is changed? Saturday night and tonight, I noticed that her eyeglasses had some sort of lotion or cream on them. Maybe the noise bothers her and she is overtired? I am going to remove her hearing aids and see if there is a difference in her behavior. Mom definitely looks like she is in pain somehow because she is moving her head side to side and wiggling her toes as she scrunches her eyes. I turned off the TV and the dimmed the lights even though it’s only 5:30 and I took out her hearing aids as well…just to see if that helps, but it doesn’t appear to. Maybe she is dreaming??? Is that possible?? Or maybe she is thinking??? Or worrying?? I just wish I knew for sure. I showed the nurses what she’s doing and they said they really don’t know what’s happening with mom and why she’s doing this…that it’s our call. The one nurse she thinks it is a burning or ichy nose problem. We’ll have to watch and see. As she slept, mom frequently moved her mitted hands up to her mouth and chin. Also, I am noticing that, although mom has the mitts on her hands, she is still wrapping her mitted hands around the trach line (the line used for suctioning her!!)!!! I told the nurse about it and asked him to come in to see, he said that the more aware mom is, the more she will want to pull the line out---a good thing, yet a bad one. I said that we need to get her off the trach and that it seems that she is on the slow track with it again. With this, the nurse put his arm around me and looking at the sign I made mom above her bed (Don’t quit 5 minutes before the miracle happens) said, “Hey Kathy, it’s only been 2 minutes!! Don’t give up now!”
Dad went back to tuck mom in tonight.
"May the God of hope fill you with all joy and peace as you trust in him, so that
you may overflow with hope by the power of the Holy Spirit." Romans 15:13
Monday, January 31, 2011
Sunday, January 30, 2011
Mom Update, January 30, 2011, Sunday
Lenny and I took dad upstate for the day and really enjoyed ourselves. Con wrote tonight's update on mom below....
--------------------------------------------------------------------------------
From: agsg3@optimum.net
To: kgranelli@aol.com
Sent: 1/30/2011 8:25:58 P.M. Eastern Standard Time
Subj: Sunday January 30th 2011
Kath,
Claudia started mom's day @ 9:30. She cleaned her ears and hearing aides. She did full PT in the chair then she worked on the calendar, Mom fell asleep while she did it. Mom listened to music on the IPAD while she was sleeping. Anthony, Con, Anthony Michael & Samantha went to see mom @ 11:00. She was sleeping when we got there. Anthony and Anthony Michael did full PT on Mom in the chair. Anthony told Mom that Anthony Michael was going to get a job @ McDonalds and Anthony said that Anthony Michael has to be careful because they might mistake him for a french fry. Mom went hysterical laughing and so did ALL of us. Sam took out the IPAD and played with mom. They played the mouth program and Tic Tac Toe. Then we all looked @ family photos on the IPAD. Mom was looking and smiling at times. Anthony was making mom laugh so much. Mom also mouthed a lot of words but we could not understand them. Then John and Ava came around 1:30 to visit with mom. We all talked and laughed a lot. Terry came after too. Sam, Anthony, Anthony Michael were working with mom with cousin Carmine's pictures. She really did not focus on the pictures. Also mom moved her feet a lot when put back in bed. BTW we noticed that when mom was in the "Chair" she was not able to move her feet because the foot rest is too high for her feet to move. Con and Anthony did full PT on her while she was in bed... we noticed that her left ankle looked a little bit swollen. Sam asked mom "Are you feeling OK" because her expression looked like she was in pain. (her eyes were squeezed shut tight). Mom said out loud "I feel good". We ALL told her how happy and proud we were of her that she spoke out loud. After that again Sam asked " What's wrong", because she had the same expression, Mom mouthed "I don't know". Anthony said "I love you" to mom. Mom mouthed I love you too. When we were about to leave we asked the nurse to put mom's mitts on and she also noticed that mom had that expression on her face. The nurse came in also with the (next shift nurse) and mentioned if we wanted to give mom some tynelol at that point we said no. The nurse and the CNA said they will keep an eye on mom. Con, Ant, Ant, Sam and Terry tucked mom in prayed with her and kissed her good night.
=
--------------------------------------------------------------------------------
From: agsg3@optimum.net
To: kgranelli@aol.com
Sent: 1/30/2011 8:25:58 P.M. Eastern Standard Time
Subj: Sunday January 30th 2011
Kath,
Claudia started mom's day @ 9:30. She cleaned her ears and hearing aides. She did full PT in the chair then she worked on the calendar, Mom fell asleep while she did it. Mom listened to music on the IPAD while she was sleeping. Anthony, Con, Anthony Michael & Samantha went to see mom @ 11:00. She was sleeping when we got there. Anthony and Anthony Michael did full PT on Mom in the chair. Anthony told Mom that Anthony Michael was going to get a job @ McDonalds and Anthony said that Anthony Michael has to be careful because they might mistake him for a french fry. Mom went hysterical laughing and so did ALL of us. Sam took out the IPAD and played with mom. They played the mouth program and Tic Tac Toe. Then we all looked @ family photos on the IPAD. Mom was looking and smiling at times. Anthony was making mom laugh so much. Mom also mouthed a lot of words but we could not understand them. Then John and Ava came around 1:30 to visit with mom. We all talked and laughed a lot. Terry came after too. Sam, Anthony, Anthony Michael were working with mom with cousin Carmine's pictures. She really did not focus on the pictures. Also mom moved her feet a lot when put back in bed. BTW we noticed that when mom was in the "Chair" she was not able to move her feet because the foot rest is too high for her feet to move. Con and Anthony did full PT on her while she was in bed... we noticed that her left ankle looked a little bit swollen. Sam asked mom "Are you feeling OK" because her expression looked like she was in pain. (her eyes were squeezed shut tight). Mom said out loud "I feel good". We ALL told her how happy and proud we were of her that she spoke out loud. After that again Sam asked " What's wrong", because she had the same expression, Mom mouthed "I don't know". Anthony said "I love you" to mom. Mom mouthed I love you too. When we were about to leave we asked the nurse to put mom's mitts on and she also noticed that mom had that expression on her face. The nurse came in also with the (next shift nurse) and mentioned if we wanted to give mom some tynelol at that point we said no. The nurse and the CNA said they will keep an eye on mom. Con, Ant, Ant, Sam and Terry tucked mom in prayed with her and kissed her good night.
=
Saturday, January 29, 2011
Mom Update, January 29, 2011, Saturday
Dad and Aunt Sophie came to see mom today too, so did Claudia, Terry, Anthony, Con, Sammy, and Anthony Michael. Anthony did mom’s full physical therapy/range of motion when they arrived. Sammy wrote that “Poppy asked nonny if she loved him and she mouthed yes.” Claudia said that dad asked mom for a kiss and she opened her mouth! Sammy also wrote that “Poppy asked nonny if she saw the snow and nonny said ‘yeah’ out loud.” Anthony, Con and the kids had mom try the marker and dry erase board and they wrote that mom made small lines on the board…it took a long time, they wrote, but she did it!! Con and mom worked with the orange tube and mom held on tightly as Con pulled the tube. This builds her arm and hand muscles. Sammy also wrote that “Poppy asked nonny if today was a good day and nonny said out loud, ‘it was good.’” Thom, who is a speech therapist and expert in assistive technology and good friend of our family, came today to assess mom. Thom worked on the IPAD with mom and had her move the pictures on the Drawing Pad app using her thumb. He also had the stylus in mom’s hand and facilitated her pressing the IPOD Touch to advance the pictures. They tried the lacing card and mom closed her thumb and pointer fingers to grab the lace. Claudia did mom’s full physical therapy/range of motion exercises later in the afternoon. Thom did 20 minutes on Memory with mom using an adaptive grasp. Mom didn’t move at all at first then raised her arm and picked 2 cards then raised her arm and hit the “back to menu” button. Thom did a thorough evaluation on mom and said that, as mom mouths words, she is not only using her mouth and tongue, but her vocal chords as well (they vibrate and there is vibration in her throat). This is a great sign that mom is trying to speak. However, as Ava said, mom should not speak aloud while on the vent because doing so can cause nodes to form on her vocal chords. Thom was not sure that mom is ready for a Passy-Muir valve yet because, while on the vent, it takes some cognition to maneuver. When I arrived tonight, Terry was with mom, holding her hand and watching that mom didn’t go anywhere near her trach tubes. Terry talked and talked to mom. Mom’s eyes were closed the whole time we were there and she kept squinting as if in pain maybe. Terry said that she told the nurse to put some cream on mom’s face because it was chapped badly and the nurse put some cortisone on it. Terry put the long, soft frog toy in mom’s hand because Terry said that mom was rubbing her face with it. Terry said that mom laughed a lot today. Mom moved her arms around a lot tonight and moved her hands to her face and lips a lot too. Terry and I rubbed mom’s hair and face to relax her and Terry sang to mom really softly too---as Terry sang, mom’s feet went up and down to the beat of the music. Terry sang, “High Hopes” and “Playmate” (mom mouthed some of the words to that song with Terry), and Terry also sang, “Do Ships Have Eyes When They Go To Sea?” (when she sang that one, she asked mom if she remembered it and mom said, “I remember”). Terry also sang 2 songs mom’s dad used to croon—“Let Me Call You Sweetheart” and “You Are My Sunshine.” Terry and I tucked mom in for bed and prayed.
"You, O king, are the king of kings. The God of heaven has given you dominion and power and might and glory;" Daniel 2:37
"You, O king, are the king of kings. The God of heaven has given you dominion and power and might and glory;" Daniel 2:37
Friday, January 28, 2011
Mom Update, January 28, 2011, Friday
Claudia began the day with mom. She did her full physical therapy/range of motion exercise. They also read through the “Getting Better” book (this is the story Claudia wrote that talks about things mom needs to do or ways she should behave in order to get better—ex. “I need to answer the doctor’s questions if I want to get better”…). Claudia thought she would try to use the 10 inch ball under mom’s knees(one at a time) to see if mom could bend either of her knees on command, but mom couldn’t do it yet. Claudia tried the thera-band next, alternately putting it under one foot and then the other. The object of the thera-band activity is to have mom complete a motion similar to pushing down on a gas pedal. Mom’s right foot couldn’t do this at all, but the toes on her left foot wiggled slightly at the command to move her foot!! This is progress; it means that mom is at least able to both understand the message to do something with her foot and to also then do something with her foot!! She was able to turn her head to Claudia's voice on the left side fully and she also watched Claudia working on her feet. Her focus is better at times now. She’s getting there.
Anthony came to see mom next and monitored the EMTs getting mom ready for her appointment with the neurologist. I came shortly after that. Dad arrived just as the EMTs were transferring mom from the bed to the guerney. We three walked beside mom down the hall and out to the ambulance. We met her at the neurologist’s office. It took a long time to hook up all the little electrodes onto mom’s head for the EEG…there must have been 20 of them at least. Each electrode goes to a different part of the brain and measures the activity there. Once the electrodes were in place, the technician dimmed the lights in the room. Only she, I, the nurse from the facility and one of the EMTs remained in the room with mom. The technician asked mom to close her eyes and relax but mom couldn’t follow the command…we would help to move her eyelids shut but then she’d open them right up. The technician asked me to help mom keep them shut and relax. I knew just what to do. I whispered to mom that we’d pray and then I “tickled” her face. “Tickling” is a word mom used (or maybe we used with mom??!!) with us when we needed to relax. Mom would gently, ever so lightly, run the tips of her fingers over our skin—like a feather touch or butterfly kiss---and this would relax us kids. Mom loved this too…so I “tickled” her face for the 20 minutes that the test ran. Mom relaxed immediately—you could see it on her face and the technician mentioned that mom was very relaxed judging by what she read on the monitor screen. When the test was over, the EMT said mom set a record for using the least amount of oxygen during a test!!! She had only used ½ a tank!!! It was anticipated that she would use much more. God is good. We don’t have the results yet but should know more in a week or 2.
Anthony, Dad and I went back to the facility with mom. We made sure she was changed and put in her wheelchair for a while. Anthony and dad did mom’s physical therapy/range of motion again right before she went into her wheelchair. We put the 10 inch ball under mom’s left knee and hand over hand moved her leg to “kick” then we asked her to “kick” but she couldn’t do it, however, Anthony said that she moved her toes ever so slightly!!! Anthony also did what he called “doing the bicycle” which is an exercise where he stands at the bottom of the bed and then takes the bottom of her feet in his hands and then rotates in a pedaling motion. Mom was very happy and smiled a lot during the visit. Dad sang to mom and she laughed almost---smiling really big!! Mom kissed Anthony when he left. He asked mom to “Give me 5!” I moved mom’s hand into Anthony’s and mom mouthed, “Four!” Anthony said, “Not four!! I want 5!!!” and mom smiled! As mom sat in her wheelchair, she leaned all the way forward in the chair and fell asleep. She was able to hold/ support her upper body by herself by leaning forward as she slept!!
Mom ate an entire cup of chocolate pudding today!! She ate vanilla pudding yesterday. She did well eating it---no signs of aspiration or of not being able to digest it.
I left to pick up Aunt Carol and Maureen, Flo and Flo came to see mom. They talked to her and, at one point, they sang in a round, “Row, row, row your boat.” They said the choir is coming to sing and see mom next Sunday, February 6. Another time, Maureen told mom she was going to go to “Dobb’s Ferry” to visit someone and mom mouthed, “Dobb’s Ferry.” She was listening to the conversation!! When Aunt Carol and I arrived, dad left to go feed Aunt Sophie. After everyone left, mom was changed and put to bed again and when Aunt Carol and I came back in the room, she smiled at us both but quickly fell asleep. We took dad to the movies again. This time we saw, “The King’s Speech.”
The pulmonologist and head respiratory therapist saw mom before I left. Mom had just fallen asleep as they entered the room. They said hello to mom and she smiled. They asked her how she felt and mom mouthed, “Fine.” They also asked her to shake their hands. The pulmonologist asked her to shake his hand and then waited and moved his hand toward mom’s and mom moved her hand toward his but didn’t exactly lift it into his hand. But she made the attempt!!! There are obvious connections being made in her brain!! The respiratory therapist told us that mom is largely not breathing over the vent at night. She does well during the day but not at night yet. I told him we had seen a positive change back in November when she was doing physical therapy with the therapist. He agreed that this helped and commented that it is typical to suddenly see a huge change---“a turn of the corner” so to speak. We anxiously await that “turn” to happen soon.
After the movie, I went back to check on mom. She was in bed awake, staring at the pictures on the wall next to her bed and smiling. She was wide-eyed but tired. I talked to her a bit and then we prayed for a while and I tucked in her for bed.
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
Anthony came to see mom next and monitored the EMTs getting mom ready for her appointment with the neurologist. I came shortly after that. Dad arrived just as the EMTs were transferring mom from the bed to the guerney. We three walked beside mom down the hall and out to the ambulance. We met her at the neurologist’s office. It took a long time to hook up all the little electrodes onto mom’s head for the EEG…there must have been 20 of them at least. Each electrode goes to a different part of the brain and measures the activity there. Once the electrodes were in place, the technician dimmed the lights in the room. Only she, I, the nurse from the facility and one of the EMTs remained in the room with mom. The technician asked mom to close her eyes and relax but mom couldn’t follow the command…we would help to move her eyelids shut but then she’d open them right up. The technician asked me to help mom keep them shut and relax. I knew just what to do. I whispered to mom that we’d pray and then I “tickled” her face. “Tickling” is a word mom used (or maybe we used with mom??!!) with us when we needed to relax. Mom would gently, ever so lightly, run the tips of her fingers over our skin—like a feather touch or butterfly kiss---and this would relax us kids. Mom loved this too…so I “tickled” her face for the 20 minutes that the test ran. Mom relaxed immediately—you could see it on her face and the technician mentioned that mom was very relaxed judging by what she read on the monitor screen. When the test was over, the EMT said mom set a record for using the least amount of oxygen during a test!!! She had only used ½ a tank!!! It was anticipated that she would use much more. God is good. We don’t have the results yet but should know more in a week or 2.
Anthony, Dad and I went back to the facility with mom. We made sure she was changed and put in her wheelchair for a while. Anthony and dad did mom’s physical therapy/range of motion again right before she went into her wheelchair. We put the 10 inch ball under mom’s left knee and hand over hand moved her leg to “kick” then we asked her to “kick” but she couldn’t do it, however, Anthony said that she moved her toes ever so slightly!!! Anthony also did what he called “doing the bicycle” which is an exercise where he stands at the bottom of the bed and then takes the bottom of her feet in his hands and then rotates in a pedaling motion. Mom was very happy and smiled a lot during the visit. Dad sang to mom and she laughed almost---smiling really big!! Mom kissed Anthony when he left. He asked mom to “Give me 5!” I moved mom’s hand into Anthony’s and mom mouthed, “Four!” Anthony said, “Not four!! I want 5!!!” and mom smiled! As mom sat in her wheelchair, she leaned all the way forward in the chair and fell asleep. She was able to hold/ support her upper body by herself by leaning forward as she slept!!
Mom ate an entire cup of chocolate pudding today!! She ate vanilla pudding yesterday. She did well eating it---no signs of aspiration or of not being able to digest it.
I left to pick up Aunt Carol and Maureen, Flo and Flo came to see mom. They talked to her and, at one point, they sang in a round, “Row, row, row your boat.” They said the choir is coming to sing and see mom next Sunday, February 6. Another time, Maureen told mom she was going to go to “Dobb’s Ferry” to visit someone and mom mouthed, “Dobb’s Ferry.” She was listening to the conversation!! When Aunt Carol and I arrived, dad left to go feed Aunt Sophie. After everyone left, mom was changed and put to bed again and when Aunt Carol and I came back in the room, she smiled at us both but quickly fell asleep. We took dad to the movies again. This time we saw, “The King’s Speech.”
The pulmonologist and head respiratory therapist saw mom before I left. Mom had just fallen asleep as they entered the room. They said hello to mom and she smiled. They asked her how she felt and mom mouthed, “Fine.” They also asked her to shake their hands. The pulmonologist asked her to shake his hand and then waited and moved his hand toward mom’s and mom moved her hand toward his but didn’t exactly lift it into his hand. But she made the attempt!!! There are obvious connections being made in her brain!! The respiratory therapist told us that mom is largely not breathing over the vent at night. She does well during the day but not at night yet. I told him we had seen a positive change back in November when she was doing physical therapy with the therapist. He agreed that this helped and commented that it is typical to suddenly see a huge change---“a turn of the corner” so to speak. We anxiously await that “turn” to happen soon.
After the movie, I went back to check on mom. She was in bed awake, staring at the pictures on the wall next to her bed and smiling. She was wide-eyed but tired. I talked to her a bit and then we prayed for a while and I tucked in her for bed.
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
Thursday, January 27, 2011
Mom Update, January 27, 2011, Thursday
Mom and I spent part of the day together today. Then dad joined us. She slept for most of it though! I don’t remember if I mentioned it before or not, but we gave about 25 staff members a “Don’t quit 5 minutes before the miracle happens” T-shirt as a holiday gift, along with an adaptation of the reflection I included in the blog. Mom is blessing so many people around her, and that still astounds me now. What is a heartache to our family, is a blessing to so many other people. After receiving her T-shirt and reading her reflection, one of the CNAs said that she knew it was time to go back to “God’s house” and this was just the sign she needed to do it. A nurse came to Claudia crying over how much she was touched by the reflection, and we have heard from many others as well. Many have also commented that watching our family interact with each other and mom has changed their perspective on love, and family and life. And I suppose that in some way, we now have mom’s undivided attention—though it isn’t in the way we want her to be of course---she is still for once (she was always a busy lady who multi-tasked all the time). It is a blessing that she is calm, and peaceful too, and not in pain in any way. But I think it’s safe to say that we all miss talking to her. Mom was ever present in our lives. She is the touchstone to many of us. Always available at any hour of the day or night.
Dad and I are watching mom as she sleeps; she is funny to watch. At times, she yawns a huge yawn and smiles but her eyes are closed. Other times, dad wiggles her foot and calls to her to wake up and mom, with eyes closed, mouths, “Stop it” to dad! We finally managed to wake her after a lot of prompting. I had to open her eyes for her and then she looked at us and smiled. She smiles a lot at dad. He sits and talks to her and she watches him and listens and smiles. At one point, she mouthed, “You are too funny” to dad. She was very sleepy for our visit but did mouth things. When the respiratory therapist came in to check on mom and her charts, mom looked at dad and asked/mouthed, “How is it?” and we both reassured her that all was fine. He mentioned that it didn’t look like mom was breathing much above the vent (I questioned him about her progress) but he said that this could just be her individual pattern because he noted that she does begin each breath on her own but then the vent completes it. I gave mom a manicure and she hated it! She doesn’t like to get her nails cut OR filed…she makes scrunched up faces and says, “Ow” a lot. Her reaction to it reminds me of Lenny when he was young!!
The speech therapist came in to check mom’s trach area for any signs of the blue dye that was put in the 1 cup of pudding mom ate today!!! The speech therapist said that she is confident in thinking that mom can handle pureed food well at this point. She is starting with liquids tomorrow. She said that she works from thick liquid to thinner liquid to the thinnest liquid. She either said she was going to try honey tomorrow or something of that consistency (but I think she said she was going to try honey). The speech therapist said that SHE is the only one who can approve the barium swallow test---I told her mom was scheduled for one already and she said that one went on hold until she approved it. She is approving it now that she did a preliminary swallow test with pureed food with mom. Mom’s neurologist ordered the barium swallow test, and the visit to the ENT… yet the people at the facility approve or disprove what gets done. It’s sort of scary in ways, because it’s like we, her family, have no say in what tests she does and doesn’t get…it’s like the facility is in charge of her now. I can’t say I like this. The speech therapist said that it will take time, like several weeks maybe, to have the barium swallow test done, but in the meantime, she said she’d continue to introduce more and more foods and textures to mom and monitor her. She said that it is tricky business because it is difficult to tell if a person aspirates or not (by eye and by temperature). She looks for signs of the blue dye in the trach, mouth…areas and also checks mom’s temperature in order to determine whether or not mom is aspirating or swallowing fully. So far, as I said before, mom seems to be doing OK. The speech therapist is ordering a modified barium swallow test. She said that she could also order a chest x-ray to check for aspirations but that, for now, since they both do the same thing, she will only order the modified barium swallow test. She said she’d keep us posted in the meantime. She said she didn’t want to order any tests at the hospital until she could tell if mom was even able to tolerate swallowing at all. She said that mom didn’t open her mouth enough on the first day but yesterday and today she opened widely. The therapist also said that, just because she is doing well now, that doesn’t mean that in a week or so, she may not do so well---her temperature may rise or she could show signs of food in the wrong places (not in her stomach or digestive tract).
After dad left, I gave mom a black magic marker and the white board and I drew a red circle and asked her to draw one too. I had to physically put the marker in her hand, but she maneuvered it into a pincer grasp by herself! Then, for the first time in a month, mom made some marks with the marker on the white board!!!! Nothing big or legible, but nonetheless, she made purposeful marks on the board!!!! She watched her hand the whole time too!!! After this, I let mom watch some of the “Electric Company” on the IPAD with the headphones for a while. Mom really, really loves this show!! It is a very sophisticated, educational children’s show. Then I left to go cook Lenny a late dinner. Since it will likely be icy later, I don’t intend to come back tonight. Mom goes for an EEG tomorrow at the neurologist’s office at 11:00. I pray all goes well, please pray too. Thanks. Mom kissed me good-bye when I left she and I prayed before I left.
“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks the door will be opened.”
Matthew 7:7-8
Dad and I are watching mom as she sleeps; she is funny to watch. At times, she yawns a huge yawn and smiles but her eyes are closed. Other times, dad wiggles her foot and calls to her to wake up and mom, with eyes closed, mouths, “Stop it” to dad! We finally managed to wake her after a lot of prompting. I had to open her eyes for her and then she looked at us and smiled. She smiles a lot at dad. He sits and talks to her and she watches him and listens and smiles. At one point, she mouthed, “You are too funny” to dad. She was very sleepy for our visit but did mouth things. When the respiratory therapist came in to check on mom and her charts, mom looked at dad and asked/mouthed, “How is it?” and we both reassured her that all was fine. He mentioned that it didn’t look like mom was breathing much above the vent (I questioned him about her progress) but he said that this could just be her individual pattern because he noted that she does begin each breath on her own but then the vent completes it. I gave mom a manicure and she hated it! She doesn’t like to get her nails cut OR filed…she makes scrunched up faces and says, “Ow” a lot. Her reaction to it reminds me of Lenny when he was young!!
The speech therapist came in to check mom’s trach area for any signs of the blue dye that was put in the 1 cup of pudding mom ate today!!! The speech therapist said that she is confident in thinking that mom can handle pureed food well at this point. She is starting with liquids tomorrow. She said that she works from thick liquid to thinner liquid to the thinnest liquid. She either said she was going to try honey tomorrow or something of that consistency (but I think she said she was going to try honey). The speech therapist said that SHE is the only one who can approve the barium swallow test---I told her mom was scheduled for one already and she said that one went on hold until she approved it. She is approving it now that she did a preliminary swallow test with pureed food with mom. Mom’s neurologist ordered the barium swallow test, and the visit to the ENT… yet the people at the facility approve or disprove what gets done. It’s sort of scary in ways, because it’s like we, her family, have no say in what tests she does and doesn’t get…it’s like the facility is in charge of her now. I can’t say I like this. The speech therapist said that it will take time, like several weeks maybe, to have the barium swallow test done, but in the meantime, she said she’d continue to introduce more and more foods and textures to mom and monitor her. She said that it is tricky business because it is difficult to tell if a person aspirates or not (by eye and by temperature). She looks for signs of the blue dye in the trach, mouth…areas and also checks mom’s temperature in order to determine whether or not mom is aspirating or swallowing fully. So far, as I said before, mom seems to be doing OK. The speech therapist is ordering a modified barium swallow test. She said that she could also order a chest x-ray to check for aspirations but that, for now, since they both do the same thing, she will only order the modified barium swallow test. She said she’d keep us posted in the meantime. She said she didn’t want to order any tests at the hospital until she could tell if mom was even able to tolerate swallowing at all. She said that mom didn’t open her mouth enough on the first day but yesterday and today she opened widely. The therapist also said that, just because she is doing well now, that doesn’t mean that in a week or so, she may not do so well---her temperature may rise or she could show signs of food in the wrong places (not in her stomach or digestive tract).
After dad left, I gave mom a black magic marker and the white board and I drew a red circle and asked her to draw one too. I had to physically put the marker in her hand, but she maneuvered it into a pincer grasp by herself! Then, for the first time in a month, mom made some marks with the marker on the white board!!!! Nothing big or legible, but nonetheless, she made purposeful marks on the board!!!! She watched her hand the whole time too!!! After this, I let mom watch some of the “Electric Company” on the IPAD with the headphones for a while. Mom really, really loves this show!! It is a very sophisticated, educational children’s show. Then I left to go cook Lenny a late dinner. Since it will likely be icy later, I don’t intend to come back tonight. Mom goes for an EEG tomorrow at the neurologist’s office at 11:00. I pray all goes well, please pray too. Thanks. Mom kissed me good-bye when I left she and I prayed before I left.
“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks the door will be opened.”
Matthew 7:7-8
Wednesday, January 26, 2011
mom Update, January 26, 2011, Wednesday
MOM ATE ½ CUP of APPLESAUCE TODAY!!!!! Yippeeee!!!! So far, so good!! She appears to be swallowing it down! Dad and Anthony were with her when she did it.
Claudia began the day with mom and, again, she was out like a light!!! Claudia did mom’s full range of motion exercises and mom still was limp and sound asleep. At one point, mom’s vent alarm rang over and over while Claudia was with her. The nurse came in to check and found that mom was fine---she asked if Claudia thought mom was fine too and Claudia said yes, but mom wouldn’t wake up, so Claudia asked for a respiratory therapist. The therapist arrived and checked mom out and found a small leak in the trach and said that they may have to change the trach today (I don’t know if they did or didn’t change it). The respiratory therapist and the nurse both said that mom was fine and just sound asleep, deeply. Sleep heals.
Dad and Anthony came to see mom late in the morning and they did mom’s physical therapy/range of motion exercises again. Mom eventually fell asleep. The Recreation therapist took mom to the large recreation room to watch others play Bowling on Nintendo Wii (she could have played too, but didn't want to).
Mom smiled when Lenny and I first arrived. She smiled bigger and more at Lenny- she seemed pleased to see him. We began to work on the book of simple commands that my friend from work made for mom. On the first page of the book (each page is made of an index card), it said, “touch nose” and mom mouthed the words as she read them when I asked her what it said. But, she didn’t touch her nose or mine. We read it again and then I asked her to do it again, but she only looked confused or annoyed. I took her hand in mine and said, “touch nose” as I moved her hand to her nose. Then I told her to touch my nose---but no reply or action, so again, I did hand over hand prompting. I repeated this cycle for 2 other commands, “Shake your head ‘no’” and “clap your hands” – all with the same result…mom could not follow these commands independently. I asked mom if she loved me and I told her I loved her, then I asked her if she loved me again and she mouthed, “I said it already.” Lenny read an article in his “Game Pro” magazine about how certain video games on the Nintendo DS and the Nintendo Wii helped rewire the brains of soldiers with Traumatic Brain Injuries (who fought in Iraq). He went out with me and we bought one of the recommended games called, “Brain Age.” Though it was difficult for mom to maneuver the Nintendo DS, Lenny helped her move the stylus and play a matching game. The whole time they played, mom watched the screen with interest. Lenny kept repeating, “Good. Same Nonny” over and over each time he and mom made a match. He played with the IPAD with mom next. Mom wore her headphones while she played the IPAD game, “Super Why” with Lenny. This is a game of letters and words—you have to find the missing letter or word. Mom really pays attention to the IPAD games. Lenny held mom’s hand in his and made her stick out her pointer finger to point to letters and words on the IPAD screen. Unlike last night, mom is not very talkative tonight at all. She is watching us and the IPAD a lot but not really talking. She is very wide-eyed at times too. Lenny tried to do the “Vegetables” on the IPAD (a picture of a vegetable is shown and the name of the vegetable is said). Several times during this activity, mom would point to the vegetable on the screen then slowly move her hand to her mouth. Lenny did the oral motor exercises on the IPAD next and mom actually modeled the “close mouth tightly” type of action!! The other actions, “pucker your lips” and “open your mouth,” mom did by having Lenny move her mouth with his hands. Overall, mom seemed dazed and maybe tired tonight. Lenny and I left for the night and we turned on the TV but left her hearing aids in and glasses on since it was earlier than usual. We prayed with mom and left.
“But you know Him, for He lives with you and will be in you.” John 14:17
Claudia began the day with mom and, again, she was out like a light!!! Claudia did mom’s full range of motion exercises and mom still was limp and sound asleep. At one point, mom’s vent alarm rang over and over while Claudia was with her. The nurse came in to check and found that mom was fine---she asked if Claudia thought mom was fine too and Claudia said yes, but mom wouldn’t wake up, so Claudia asked for a respiratory therapist. The therapist arrived and checked mom out and found a small leak in the trach and said that they may have to change the trach today (I don’t know if they did or didn’t change it). The respiratory therapist and the nurse both said that mom was fine and just sound asleep, deeply. Sleep heals.
Dad and Anthony came to see mom late in the morning and they did mom’s physical therapy/range of motion exercises again. Mom eventually fell asleep. The Recreation therapist took mom to the large recreation room to watch others play Bowling on Nintendo Wii (she could have played too, but didn't want to).
Mom smiled when Lenny and I first arrived. She smiled bigger and more at Lenny- she seemed pleased to see him. We began to work on the book of simple commands that my friend from work made for mom. On the first page of the book (each page is made of an index card), it said, “touch nose” and mom mouthed the words as she read them when I asked her what it said. But, she didn’t touch her nose or mine. We read it again and then I asked her to do it again, but she only looked confused or annoyed. I took her hand in mine and said, “touch nose” as I moved her hand to her nose. Then I told her to touch my nose---but no reply or action, so again, I did hand over hand prompting. I repeated this cycle for 2 other commands, “Shake your head ‘no’” and “clap your hands” – all with the same result…mom could not follow these commands independently. I asked mom if she loved me and I told her I loved her, then I asked her if she loved me again and she mouthed, “I said it already.” Lenny read an article in his “Game Pro” magazine about how certain video games on the Nintendo DS and the Nintendo Wii helped rewire the brains of soldiers with Traumatic Brain Injuries (who fought in Iraq). He went out with me and we bought one of the recommended games called, “Brain Age.” Though it was difficult for mom to maneuver the Nintendo DS, Lenny helped her move the stylus and play a matching game. The whole time they played, mom watched the screen with interest. Lenny kept repeating, “Good. Same Nonny” over and over each time he and mom made a match. He played with the IPAD with mom next. Mom wore her headphones while she played the IPAD game, “Super Why” with Lenny. This is a game of letters and words—you have to find the missing letter or word. Mom really pays attention to the IPAD games. Lenny held mom’s hand in his and made her stick out her pointer finger to point to letters and words on the IPAD screen. Unlike last night, mom is not very talkative tonight at all. She is watching us and the IPAD a lot but not really talking. She is very wide-eyed at times too. Lenny tried to do the “Vegetables” on the IPAD (a picture of a vegetable is shown and the name of the vegetable is said). Several times during this activity, mom would point to the vegetable on the screen then slowly move her hand to her mouth. Lenny did the oral motor exercises on the IPAD next and mom actually modeled the “close mouth tightly” type of action!! The other actions, “pucker your lips” and “open your mouth,” mom did by having Lenny move her mouth with his hands. Overall, mom seemed dazed and maybe tired tonight. Lenny and I left for the night and we turned on the TV but left her hearing aids in and glasses on since it was earlier than usual. We prayed with mom and left.
“But you know Him, for He lives with you and will be in you.” John 14:17
Tuesday, January 25, 2011
Mom Update, January 25, 2011, Tuesday
MOM ATE A FEW SPOONFULS OF APPLESAUCE TODAY!!!!!!!!!!!!!! The first solid food by mouth in 7 1/2 months!!!! YAHOOOOO!!!!!! So far, so good; it looks like she is keeping it down. She ate it after she saw Claudia and everyone else said that her spirits were lifted after she ate the applesauce---Carmine said that eating solid food would do a lot for her confidence and attitude---and it seems like it did. Tomorrow, the speech therapist at the center told dad that she was going to try 1/2 cup of applesauce and then more than that the day after if all goes well.
Claudia began the day with mom today. She said that mom was out like a light and her limbs were limp even throughout physical therapy/range of motion exercises. Claudia said that mom winced during some of the exercises but didn't wake up. Mom's CNA came in to wash mom up and get her ready for the day next. Mom's eyes were closed throughout this process too, though mom did begin to move her feet spontaneously and move around in the bed during this time. The CNA told Claudia that mom is now beginning to have a "fear or startle reflex" back again. This is a good thing. When mom first came back from the hospital in January, mom was not afraid of the hoyer (spelling?? the machine mom sits in that lifts her up off the bed and into her chair and vice versa). Mom is now showing fear and startle reflexes during this time by holding onto the straps while on the lift etc. This is a good thing because mom hasn't shown this reflex since before the incident on December 22.
Dad wrote that mom was awake today and had a good day. He said that he did her full physical therapy/range of motion exercises and worked on the photos of family and the orange scrunchy tube. He said she was very chatty (mouthing things). Dad also said that mom is touching the trach line again, now that her hands and arms are moving better.
John and Ava came to see mom this afternoon. John did her physical therapy/range of motion exercises again and he said that mom appeared to resist him and be annoyed by it. He apologized and told her she had to do it in order to get better. He, too, said that mom was "talking" (mouthing) up a storm!!!! But he couldn't understand a lot of what she was saying to him. Ava and Claudia were right--mom needs that Passy-Muir Valve on her trach so that she can speak aloud!!!!! We have to get the facility to OK it!!!! They read the "All About Me" book and photographs of the family and they sang to mom and were cracking jokes and she was laughing. John said that mom had a lot of strength in her right arm and it moved with strength. She moved her arms a lot but mostly the right one. John played SOLITAIRE on the IPAD and mom was very, very interested in watching him play. He tried to get mom to touch the cards on the IPAD but mom didn't want to do that---she wanted to watch him play more. She did hold the IPAD for a little while though.
Tonight, Lenny wanted to go tuck mom in for bed. He called me when he got there to ask how late she was allowed to stay up because she was mouthing a lot of words and sentences to him and he was having fun with her (he asked almost as if she was his friend and he wanted to know how long she was allowed to stay up and play!!). Lenny said, when he arrived tonight, mom was looking at dad's picture on the wall and he asked if she was looking at it and mom mouthed, "Yup, I miss him." Mom also kept mouthing, "I want....I want...." He also asked her if she knew his name and she mouthed, "Yup, Lenny Granelli" and then he let her touch his beard and asked, "What do you think of that?" and she said, "I like it." Lenny said that mom touched his beard in a pincer grasp-type of way. He let her "talk" to me on the phone too. I kept saying that I loved her and missed her and asking if she loved and missed me too and Lenny said she kept saying, "Yup" over and over. Mom kept nudging Lenny to try to communicate that she wanted the clipboard off her leg. Then Lenny told mom it was time for bed and they said prayers and he got her settled and left.
"...for I am the LORD, who heals you" Exodus 15:26
Claudia began the day with mom today. She said that mom was out like a light and her limbs were limp even throughout physical therapy/range of motion exercises. Claudia said that mom winced during some of the exercises but didn't wake up. Mom's CNA came in to wash mom up and get her ready for the day next. Mom's eyes were closed throughout this process too, though mom did begin to move her feet spontaneously and move around in the bed during this time. The CNA told Claudia that mom is now beginning to have a "fear or startle reflex" back again. This is a good thing. When mom first came back from the hospital in January, mom was not afraid of the hoyer (spelling?? the machine mom sits in that lifts her up off the bed and into her chair and vice versa). Mom is now showing fear and startle reflexes during this time by holding onto the straps while on the lift etc. This is a good thing because mom hasn't shown this reflex since before the incident on December 22.
Dad wrote that mom was awake today and had a good day. He said that he did her full physical therapy/range of motion exercises and worked on the photos of family and the orange scrunchy tube. He said she was very chatty (mouthing things). Dad also said that mom is touching the trach line again, now that her hands and arms are moving better.
John and Ava came to see mom this afternoon. John did her physical therapy/range of motion exercises again and he said that mom appeared to resist him and be annoyed by it. He apologized and told her she had to do it in order to get better. He, too, said that mom was "talking" (mouthing) up a storm!!!! But he couldn't understand a lot of what she was saying to him. Ava and Claudia were right--mom needs that Passy-Muir Valve on her trach so that she can speak aloud!!!!! We have to get the facility to OK it!!!! They read the "All About Me" book and photographs of the family and they sang to mom and were cracking jokes and she was laughing. John said that mom had a lot of strength in her right arm and it moved with strength. She moved her arms a lot but mostly the right one. John played SOLITAIRE on the IPAD and mom was very, very interested in watching him play. He tried to get mom to touch the cards on the IPAD but mom didn't want to do that---she wanted to watch him play more. She did hold the IPAD for a little while though.
Tonight, Lenny wanted to go tuck mom in for bed. He called me when he got there to ask how late she was allowed to stay up because she was mouthing a lot of words and sentences to him and he was having fun with her (he asked almost as if she was his friend and he wanted to know how long she was allowed to stay up and play!!). Lenny said, when he arrived tonight, mom was looking at dad's picture on the wall and he asked if she was looking at it and mom mouthed, "Yup, I miss him." Mom also kept mouthing, "I want....I want...." He also asked her if she knew his name and she mouthed, "Yup, Lenny Granelli" and then he let her touch his beard and asked, "What do you think of that?" and she said, "I like it." Lenny said that mom touched his beard in a pincer grasp-type of way. He let her "talk" to me on the phone too. I kept saying that I loved her and missed her and asking if she loved and missed me too and Lenny said she kept saying, "Yup" over and over. Mom kept nudging Lenny to try to communicate that she wanted the clipboard off her leg. Then Lenny told mom it was time for bed and they said prayers and he got her settled and left.
"...for I am the LORD, who heals you" Exodus 15:26
Monday, January 24, 2011
Mom Update, January 24, 2011, Monday
Claudia began mom's day this morning. Mom was sleeping when Claudia arrived. She did her physical therapy/range of motion exercises. Then, Carmine (Con and John's cousin who is a speech therapist) came early to see mom. Claudia showed him everything we do with mom and he said it is on target and probably better than what the facility would provide for her in the way of therapy. His method, at this point (from what I was told), is that he is trying to get mom to glance in the direction of a specific picture. He is trying to capture mom's attention and maintain and lengthen it. He shows mom a binder with 2 pictures on a page, holding them at his face level with his eyes showing over the top of the pictures and dead center and then he says the word and looks at where mom's eyes look and if mom looks at the correct picture he says (she can't see his mouth but can only hear his voice), then he counts that as a correct response. He says the word like, "Shoe" showing her 2 pictures at a time like this and if she looks at the right picture, he praises her greatly. He mentioned several times that he thinks mom is depressed. He also had colored pictures. Claudia showed Carmine the IPAD and the APPS (programs) that we put on it for language and oral motor development. These programs, again, show an actual person's mouth, then you hear a word, then the mouth says the word and then you are to say the word or make the face or whatever. Claudia did oral motor exercises with mom on the IPAD (mouth open, pucker your lips, stick out your tongue so mom isn't overloaded). Mom looked at the program intently. Claudia did actual, physical movement of mom's lips and mouth with Claudia's hands on mom's mouth. Mom was receptive to this. She can't do any of it alone yet, but is on the verge.
Anthony and Anthony Michael came to see mom next. They did mom's full range of motion/physical therapy exercises. They wrote that mom laughed alot!!! They talked to mom and had her exercise with the orange scrunchy tube (her hands and arms). They also worked on Carmine's pictures with mom as well. Mom fell asleep for about 1/2 hour at one point but then woke up.
Dad came to see mom just after the guys left. Dad did mom's full physical therapy/range of motion exercises. He also worked with the photos with mom and the orange tube as well. Mom put her hands together as she slept. She slept on and off while dad was there. Dad had mom's right hearing aid fixed and returned it to mom today. Dad said that mom became sad when he said he was leaving around 7 p..m. and this made dad sad too.
Lenny, JoAnn and I came to tuck mom in tonight. I tiptoed into her room but she was awake with her glasses on, relaxing and watching TV contentedly. When she saw my smiling face and me waving at her, she looked hesitantly at me---maybe as if to say, "Oh no, what does she want now?" or "What does she want me to do now?" hahaha! But I stroked her hair and whispered in her ear how much I love her and miss her and then I told her she could still watch TV and then I asked her if she wanted to pray with me and she mouthed, "Yup." We prayed a long while tonight as I held her in my arms. Then, I anointed her with oil and dimmed the lights and kissed her good night and she kissed me back too. I just wish somehow that there was more we could be doing for her...it is so frustrating to see her like this...for me anyway, and for now. I need to spend some time with God so that I can, once again, release mom into His Hands and not mine...it isn't up to me or us but mom is in His Hands alone.
"And be sure of this: I am with you always, even to the end of the age." Matthew28:20
Anthony and Anthony Michael came to see mom next. They did mom's full range of motion/physical therapy exercises. They wrote that mom laughed alot!!! They talked to mom and had her exercise with the orange scrunchy tube (her hands and arms). They also worked on Carmine's pictures with mom as well. Mom fell asleep for about 1/2 hour at one point but then woke up.
Dad came to see mom just after the guys left. Dad did mom's full physical therapy/range of motion exercises. He also worked with the photos with mom and the orange tube as well. Mom put her hands together as she slept. She slept on and off while dad was there. Dad had mom's right hearing aid fixed and returned it to mom today. Dad said that mom became sad when he said he was leaving around 7 p..m. and this made dad sad too.
Lenny, JoAnn and I came to tuck mom in tonight. I tiptoed into her room but she was awake with her glasses on, relaxing and watching TV contentedly. When she saw my smiling face and me waving at her, she looked hesitantly at me---maybe as if to say, "Oh no, what does she want now?" or "What does she want me to do now?" hahaha! But I stroked her hair and whispered in her ear how much I love her and miss her and then I told her she could still watch TV and then I asked her if she wanted to pray with me and she mouthed, "Yup." We prayed a long while tonight as I held her in my arms. Then, I anointed her with oil and dimmed the lights and kissed her good night and she kissed me back too. I just wish somehow that there was more we could be doing for her...it is so frustrating to see her like this...for me anyway, and for now. I need to spend some time with God so that I can, once again, release mom into His Hands and not mine...it isn't up to me or us but mom is in His Hands alone.
"And be sure of this: I am with you always, even to the end of the age." Matthew28:20
Sunday, January 23, 2011
Mom Update, January 23, 2001, Sunday
Today is Aunt Sophie’s 94th Birthday!!!!! We all went out to eat with her (she is at mom and
dad’s house).
Anthony, Con and the kids began the day with mom. They said she was awake and relaxed. Dad and Terry came too. I guess mom just sat and stared but I am not sure—all they wrote on our daily log was “awake and relaxed.”
After we had dinner with Aunt Sophie, Anthony, Con, Clauida, John, Aunt Sophie, Dad, Terry, JoAnn and I came back to visit with mom. Mom was alert, awake and smiling a lot. She laughed when John came in because he was wearing a face mask and told her he was some silly doctor. Claudia wrote on the white board, “Wipe your nose” at one point and mom mouthed it. Mom was trying to reach her nose but couldn’t and then we put a tissue in her hand and she did manage to reach it. Claudia wrote on the white board and gave mom a tissue to hold so that she could erase what Claudia drew or wrote on the board. Mom did actually move the tissue on the board a little bit, then Claudia did hand over hand prompting to help mom do it. Mom’s CNA came in to check on her and tried to take mom’s hand but the CNA didn’t realize that mom was holding dad’s hand---and mom grabbed dad’s hand tighter and resisted moving toward the CNA, as if to say, “Hey, that’s my man.”
Later, when Anthony, Con, John and Aunt Sophie left, we tried to do the IPAD with mom. We started using an APP (this is a game of sorts) that shows an actual mouth of a person (that whole area of the face). While looking at the face, the person on the screen gives a verbal prompt to model the facial/mouth movement being shown on the screen. For example, a mouth area of a face appears on the screen and you hear a person saying, “Pucker lips like this and hold” Then the person on the IPAD counts for a count of 3 seconds while making the face. The person watching the IPAD face then has to model the face being shown. Claudia had to put her fingers on mom’s mouth in order to prompt mom and to move mom’s lips for her—mom was receptive to that. She didn’t resist. At times, mom was attentive to the program, and other times, she wasn’t. One of the nurses told me today that she noticed that mom was much more alert. We also tried the alphabet with the IPAD APP that showed an actual mouth saying the letters. Mom watched and listened for a while but then fell asleep. When we use the IPAD with mom, we put headphones on her in order to block out extraneous noise and help her focus. The nurse commented that when she spoke to mom, mom turned to look at her and even mouthed something to her (mom did this twice with the nurse today).
Mom fell asleep so we left and took dad to the movies. We saw "The Way Home" true story and very good! Dad enjoyed it a lot (mom would have loved it). After the movie, JoAnn and I went back to tuck mom in and pray. She was awake and watching TV when I got to her room. I dimmed the lights and put on the timer on the TV and tucked her in and prayed with her.
"Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need." Matthew 6:33
dad’s house).
Anthony, Con and the kids began the day with mom. They said she was awake and relaxed. Dad and Terry came too. I guess mom just sat and stared but I am not sure—all they wrote on our daily log was “awake and relaxed.”
After we had dinner with Aunt Sophie, Anthony, Con, Clauida, John, Aunt Sophie, Dad, Terry, JoAnn and I came back to visit with mom. Mom was alert, awake and smiling a lot. She laughed when John came in because he was wearing a face mask and told her he was some silly doctor. Claudia wrote on the white board, “Wipe your nose” at one point and mom mouthed it. Mom was trying to reach her nose but couldn’t and then we put a tissue in her hand and she did manage to reach it. Claudia wrote on the white board and gave mom a tissue to hold so that she could erase what Claudia drew or wrote on the board. Mom did actually move the tissue on the board a little bit, then Claudia did hand over hand prompting to help mom do it. Mom’s CNA came in to check on her and tried to take mom’s hand but the CNA didn’t realize that mom was holding dad’s hand---and mom grabbed dad’s hand tighter and resisted moving toward the CNA, as if to say, “Hey, that’s my man.”
Later, when Anthony, Con, John and Aunt Sophie left, we tried to do the IPAD with mom. We started using an APP (this is a game of sorts) that shows an actual mouth of a person (that whole area of the face). While looking at the face, the person on the screen gives a verbal prompt to model the facial/mouth movement being shown on the screen. For example, a mouth area of a face appears on the screen and you hear a person saying, “Pucker lips like this and hold” Then the person on the IPAD counts for a count of 3 seconds while making the face. The person watching the IPAD face then has to model the face being shown. Claudia had to put her fingers on mom’s mouth in order to prompt mom and to move mom’s lips for her—mom was receptive to that. She didn’t resist. At times, mom was attentive to the program, and other times, she wasn’t. One of the nurses told me today that she noticed that mom was much more alert. We also tried the alphabet with the IPAD APP that showed an actual mouth saying the letters. Mom watched and listened for a while but then fell asleep. When we use the IPAD with mom, we put headphones on her in order to block out extraneous noise and help her focus. The nurse commented that when she spoke to mom, mom turned to look at her and even mouthed something to her (mom did this twice with the nurse today).
Mom fell asleep so we left and took dad to the movies. We saw "The Way Home" true story and very good! Dad enjoyed it a lot (mom would have loved it). After the movie, JoAnn and I went back to tuck mom in and pray. She was awake and watching TV when I got to her room. I dimmed the lights and put on the timer on the TV and tucked her in and prayed with her.
"Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need." Matthew 6:33
Saturday, January 22, 2011
Mom Update, January 22, 2011, Saturday
Claudia began the day with mom this morning. Mom had a shower today and she loves that. Claudia did mom’s physical therapy/full range of motion exercises and then did the IPAD. On the IPAD, mom and Claudia did some speech apps and the “Fruits and Vegetable” vocabulary game as well. Mom watched, “The Electric Company” on the IPAD too. As Claudia was leaving, Anthony, Con, Anthony-Michael, and Sammy came to see mom late in the morning. Today is Anthony Michael’s 15th birthday!! Claudia wrote, “Happy Birthday” on the white board and
mom read, “py Birthday” to Anthony Michael. Claudia had attached a stylus for the IPAD onto a rod and gave it to mom because they realized that she was touching the IPAD. When she took the stylus, Anthony asked mom if she thought she was Guy Lombardo and mom cracked up laughing!!! Anthony, Con and the kids talked to mom and made her laugh a lot. They read the “All About Me” book to mom. Then they also did her physical therapy/range of motion exercises 2 times. They said that mom raised her right hand to try to touch her forehead a lot and moved and raised her left arm a couple of times. She fell asleep for about an hour and then they left. Dad had arrived just before they left. Dad did her physical exercises again and they talked to mom and watched TV until she fell asleep. Terry came to see mom just around dinner time. Dad and Terry said that mom actually touched her mouth and nose a few times with her right hand. Dad said that mom put her hands together as she slept. JoAnn and I came just after dinner to see mom. She greeted us with a smile and was in bed watching TV with the closed captioning on (Dad left when we arrived). JoAnn stretched mom’s hands and also blew bubbles for mom to track. Mom watched the bubbles and she also held onto 2 of her piggies (one that Ava gave her and one that I gave her). The nurses came in to change mom and then I stroked her face and arm and played with her hair and she fell asleep. Another good day. Amen.
"Weeping may last through the night, but joy comes with the morning" Psalm 30:5
mom read, “py Birthday” to Anthony Michael. Claudia had attached a stylus for the IPAD onto a rod and gave it to mom because they realized that she was touching the IPAD. When she took the stylus, Anthony asked mom if she thought she was Guy Lombardo and mom cracked up laughing!!! Anthony, Con and the kids talked to mom and made her laugh a lot. They read the “All About Me” book to mom. Then they also did her physical therapy/range of motion exercises 2 times. They said that mom raised her right hand to try to touch her forehead a lot and moved and raised her left arm a couple of times. She fell asleep for about an hour and then they left. Dad had arrived just before they left. Dad did her physical exercises again and they talked to mom and watched TV until she fell asleep. Terry came to see mom just around dinner time. Dad and Terry said that mom actually touched her mouth and nose a few times with her right hand. Dad said that mom put her hands together as she slept. JoAnn and I came just after dinner to see mom. She greeted us with a smile and was in bed watching TV with the closed captioning on (Dad left when we arrived). JoAnn stretched mom’s hands and also blew bubbles for mom to track. Mom watched the bubbles and she also held onto 2 of her piggies (one that Ava gave her and one that I gave her). The nurses came in to change mom and then I stroked her face and arm and played with her hair and she fell asleep. Another good day. Amen.
"Weeping may last through the night, but joy comes with the morning" Psalm 30:5
Wednesday, January 19, 2011
Mom Update, January 19, 2011, Wednesday
Mom saw the neurologist today. Claudia began mom’s day and found mom very alert and awake, focusing and responding to the head respiratory therapist (watching him, looking at him, smiling at him—not sure if she spoke to him or not). Claudia did mom’s full physical therapy/range of motion exercises but, by this time, mom had closed her eyes tightly, squinting and behaved as though she was asleep. Claudia told mom to open her eyes and stop being a “phoney baloney” but mom just clenched them closed tighter, so Claudia opened her eyes for her and mom stayed awake. Claudia and mom read through the, “All About Me” book and the “Getting Better” book (Claudia stressed going to the neurologist and following commands and focusing). Anthony came next and did mom’s full range of motion/physical therapy exercises. Carmine (John and Con’s cousin who is a speech therapist) came to see mom this morning, but the CNA was dressing mom and took a while so Carmine had to leave shortly after he saw mom. Anthony also worked on the nut and bolt with mom as well but mom fell back to sleep again. Dad, JoAnn and I came to see mom next in the early afternoon. Mom was asleep in the wheelchair. She slept for a bit then woke and smiled at us (slight smile not a big one). Flo and Maureen came to see mom while we were there. We all talked to mom and dad and I stretched her out a bit. Dad read the “Getting Better” book again with an “assist” from Maureen (she turned the pages and dad read). Mom kept falling asleep on and off.
Mom saw the neurologist this afternoon. Someone asked about how she gets there. Mom is taken to her doctor appointments by an ambulance service that takes mom off the facility vent and hooks her up to their portable vent and oxygen tanks. The service was 35 minutes late arriving at the facility to pick up mom. Then, after she was on the guerney and on her way out of the facility, we stopped at the nurse’s station for a complete set of paperwork to take to the doctor’s office (the EMT realized we didn’t have a complete set). At the nurse’s station, we were given a complete set with mom’s name on the top. Luckily, the EMT read through it and asked me why mom was being taken to the doctor and what doctor she was going to. I answered that she was going to the neurologist. The EMT then asked if I was sure and what she was going for. I told her for a neurological re-evaluation and the EMT said, “Well it says here that she is going for a fractured femur” UGH!!!!!!!!!!!!!!!! I grabbed the chart and sure enough that’s what it said---but I realized by looking at the top of the page that the name on the page was MARIE someone!!!!!!!! IT WASN’T MOM’S REPORT!!! The nurse in charge of traveling to the doctor with mom quickly fixed the problem for us but was scolded by the head supervisory nurse (even though he was not the person who compiled the chart)!!!
The doctor checked mom and she responded really well! Better than she did back in early December. She gave him eye contact when he spoke to her, she tracked his finger up/down, side to side, she moved her calf and foot at the ankle (better on right then left side), she said, “Ow!” when he pinched her left foot, she squeezed his hand when he told her to. He told us her setback was due to her collapsed lung, and a bad case of sinusitis!! He ordered a visit to an ENT for a thorough evaluation, a CAT Scan, an EEG, a polysumnography (sleep apnea test), and a swallow test. He will see her again in the end of March. He said she was much better than she was in the hospital but not as good as she was in early December (alertness). He reiterated the importance of working with her aggressively at this time since she only has a window of another few months for rapid recovery. After that, recovery can happen but at a much slower pace. He also said that, in her current condition, she is much more susceptible to setbacks over things that are common to the average person (a cold, sinusitis…). Claudia asked the neurologist if it is possible for mom to have all her tests done in the same day (the sleep test is an overnighter). He didn’t see why not. John came up with a good thought about asking the Social Worker at the facility to find out if mom goes to the hospital for her tests and stays overnight, does it count toward her 14 day bed hold for Medicaid?? It doesn’t seem like it should count, but we should ask and then get the answer in writing. Otherwise, it is possible that the facility could move mom’s room AGAIN!! (a 4th time)!!! We gave some of our favorite staff members a “Don’t quit” T-shirt along with our Christmas note…some received the shirt today and others will receive theirs over the next few days.
Lenny went to tuck mom in tonight. When he arrived, mom was asleep though he was wishing that she was awake so he could talk to her. He took her hearing aids out, set the TV timer, dimmed the lights, and prayed over her.
"...my hope Lord, is in you." Psalm 25:22
Mom saw the neurologist this afternoon. Someone asked about how she gets there. Mom is taken to her doctor appointments by an ambulance service that takes mom off the facility vent and hooks her up to their portable vent and oxygen tanks. The service was 35 minutes late arriving at the facility to pick up mom. Then, after she was on the guerney and on her way out of the facility, we stopped at the nurse’s station for a complete set of paperwork to take to the doctor’s office (the EMT realized we didn’t have a complete set). At the nurse’s station, we were given a complete set with mom’s name on the top. Luckily, the EMT read through it and asked me why mom was being taken to the doctor and what doctor she was going to. I answered that she was going to the neurologist. The EMT then asked if I was sure and what she was going for. I told her for a neurological re-evaluation and the EMT said, “Well it says here that she is going for a fractured femur” UGH!!!!!!!!!!!!!!!! I grabbed the chart and sure enough that’s what it said---but I realized by looking at the top of the page that the name on the page was MARIE someone!!!!!!!! IT WASN’T MOM’S REPORT!!! The nurse in charge of traveling to the doctor with mom quickly fixed the problem for us but was scolded by the head supervisory nurse (even though he was not the person who compiled the chart)!!!
The doctor checked mom and she responded really well! Better than she did back in early December. She gave him eye contact when he spoke to her, she tracked his finger up/down, side to side, she moved her calf and foot at the ankle (better on right then left side), she said, “Ow!” when he pinched her left foot, she squeezed his hand when he told her to. He told us her setback was due to her collapsed lung, and a bad case of sinusitis!! He ordered a visit to an ENT for a thorough evaluation, a CAT Scan, an EEG, a polysumnography (sleep apnea test), and a swallow test. He will see her again in the end of March. He said she was much better than she was in the hospital but not as good as she was in early December (alertness). He reiterated the importance of working with her aggressively at this time since she only has a window of another few months for rapid recovery. After that, recovery can happen but at a much slower pace. He also said that, in her current condition, she is much more susceptible to setbacks over things that are common to the average person (a cold, sinusitis…). Claudia asked the neurologist if it is possible for mom to have all her tests done in the same day (the sleep test is an overnighter). He didn’t see why not. John came up with a good thought about asking the Social Worker at the facility to find out if mom goes to the hospital for her tests and stays overnight, does it count toward her 14 day bed hold for Medicaid?? It doesn’t seem like it should count, but we should ask and then get the answer in writing. Otherwise, it is possible that the facility could move mom’s room AGAIN!! (a 4th time)!!! We gave some of our favorite staff members a “Don’t quit” T-shirt along with our Christmas note…some received the shirt today and others will receive theirs over the next few days.
Lenny went to tuck mom in tonight. When he arrived, mom was asleep though he was wishing that she was awake so he could talk to her. He took her hearing aids out, set the TV timer, dimmed the lights, and prayed over her.
"...my hope Lord, is in you." Psalm 25:22
Tuesday, January 18, 2011
Mom Update, January 18, 2011, Tuesday
I began the day with mom this morning. Claudia slipped on the ice in her driveway at 6:20 a.m. and fell—sore hip and arm—say a prayer for her. When I arrived at mom’s room, she was fast asleep. I began her physical therapy/range of motion exercises and put her glasses on and her hearing aids in. Shortly thereafter, her CNA came to get her bathed and dressed. While mom’s CNA (certified nurse’s aide) got mom ready for the day (sponge bathing her and dressing her), the CNA began to talk to me. We had a long conversation, she said, “My residents give me hope every day. I look at them and think, ‘If they can make it, so can I.’ And I watch your dad, sitting here day after day, waiting for her. There aren’t many men in the world like Mr. G. I want to find a good man like him.” Then she said, “Hey, Mrs. G. you need to get better because you have a really good man waiting for you.” She also commented on how committed we are to each other and to mom as a family...and she said that she can’t imagine how hard this all is on dad (and all of us). She said that she had a recent break-up and was very, very distressed over it but the only thing that kept her going was thinking about how much dad loves mom and how there must be good men out there. She said that many spouses would not make the commitment to each other like dad does with mom…coming to see her twice a day or sitting by her side all day long. She said many spouses would find other people to be with or turn to addictions. Once again, it is a wonder how God takes one person’s woes and turns them into a way to bless and help somebody else. You never know.
While she dressed and bathed mom, I noted that mom used to be able to follow commands to hold onto the bed rail or to help in turning, but no more now at this time. Mom’s vent was down from 12 to 10 and the tidal volume was raised from 500 to 600(this is all good in the weaning process).
Anthony and dad came next and did her full physical therapy/range of motion exercises. Mom looked at Anthony when he spoke and also turned her head to look at dad when he spoke too. She smiled a lot at them and tried to mouth words but they didn’t understand what she was saying.
I came back to see mom in the afternoon and she gave me a kiss hello and good-bye. She had just returned from the recreation room where they all were “playing drums” to music. Mom usually likes to do this. Mom was sitting in her room in the wheelchair (sitting up really well—supporting herself upright well) and watching the Food Channel when I arrived and left.
Claudia, Dad, Con, Anthony Michael and Samantha saw mom this evening and mom was awake. They read the “All About Me” book, grabbed her hands to make her clap and to clasp her hands, and they also did her full physical therapy/range of motion exercises and full leg lifts. They wrote her name on the white board for her to read but she only tracked it with her eyes and didn’t mouth her name. Claudia used the scrunchy, orange tube again to exercise mom’s arms. She put the tube in mom’s right hand and pulled away from her and she held on and moved her arm 5 times. Then Claudia put the tube in her left hand and moved the tube up and down first so that mom’s grip would be better and firmer and then she lifted her arm out and in. And when mom holds the middle of the tube with her left hand she did this better. She has never done this before. Mom also tried to grab the tube from Claudia---ANOTHER FIRST!! They did the thera-putty in mom’s hand and she pulled the putty to the side across her body and with her left hand she pulled in an outward motion away from Claudia (another first). She did this against gravity!! Anthony Michael and Claudia did 10 pegs in the pegboard and mom looked at her hand the whole time (which is NEW and great!! Good focus). Claudia is working on attention—getting mom to focus on what she is doing. This is a goal for mom, to pay attention to the tasks at hand and to her body as she does things (Mind/body connections). Dad and Claudia tried to get mom to do a “High Five” but mom didn’t do it—they waited 7-9 minutes for a response and then mom mouthed, “Don’t want to” and dad said, “You need to!” Mom mouthed, “What?” “Pull” and “Five pulls.” She moved her right and left arms up near her face too but never reached her face but came close!! She moved around a lot tonight.
“…be strong through the grace that God gives you in Christ Jesus.” 2 Timothy 2:1
While she dressed and bathed mom, I noted that mom used to be able to follow commands to hold onto the bed rail or to help in turning, but no more now at this time. Mom’s vent was down from 12 to 10 and the tidal volume was raised from 500 to 600(this is all good in the weaning process).
Anthony and dad came next and did her full physical therapy/range of motion exercises. Mom looked at Anthony when he spoke and also turned her head to look at dad when he spoke too. She smiled a lot at them and tried to mouth words but they didn’t understand what she was saying.
I came back to see mom in the afternoon and she gave me a kiss hello and good-bye. She had just returned from the recreation room where they all were “playing drums” to music. Mom usually likes to do this. Mom was sitting in her room in the wheelchair (sitting up really well—supporting herself upright well) and watching the Food Channel when I arrived and left.
Claudia, Dad, Con, Anthony Michael and Samantha saw mom this evening and mom was awake. They read the “All About Me” book, grabbed her hands to make her clap and to clasp her hands, and they also did her full physical therapy/range of motion exercises and full leg lifts. They wrote her name on the white board for her to read but she only tracked it with her eyes and didn’t mouth her name. Claudia used the scrunchy, orange tube again to exercise mom’s arms. She put the tube in mom’s right hand and pulled away from her and she held on and moved her arm 5 times. Then Claudia put the tube in her left hand and moved the tube up and down first so that mom’s grip would be better and firmer and then she lifted her arm out and in. And when mom holds the middle of the tube with her left hand she did this better. She has never done this before. Mom also tried to grab the tube from Claudia---ANOTHER FIRST!! They did the thera-putty in mom’s hand and she pulled the putty to the side across her body and with her left hand she pulled in an outward motion away from Claudia (another first). She did this against gravity!! Anthony Michael and Claudia did 10 pegs in the pegboard and mom looked at her hand the whole time (which is NEW and great!! Good focus). Claudia is working on attention—getting mom to focus on what she is doing. This is a goal for mom, to pay attention to the tasks at hand and to her body as she does things (Mind/body connections). Dad and Claudia tried to get mom to do a “High Five” but mom didn’t do it—they waited 7-9 minutes for a response and then mom mouthed, “Don’t want to” and dad said, “You need to!” Mom mouthed, “What?” “Pull” and “Five pulls.” She moved her right and left arms up near her face too but never reached her face but came close!! She moved around a lot tonight.
“…be strong through the grace that God gives you in Christ Jesus.” 2 Timothy 2:1
Monday, January 17, 2011
Mom Update, January 17, 2011, Monday
Claudia and Ava began mom’s day today. they did her full physical therapy/range of motion exercises. Ava called to mom, “Nonny” and mom mouthed, “What?” Mom also mouthed, “Ow” when they worked on her arms. Ava used the massager on mom and asked her if she liked it and mom mouthed, “Yeah.” They worked on the IPAD with mom too – Tangrams (hand over hand prompting/full prompt)and they helped her separate and stretch out her pointer finger to move the shapes around. Mom also watched the “Electric Company” on the IPAD as well (she enjoys this—mom was always interested in language and words). They tried to do a “nut and bolt” but mom didn’t look at her hands or the items and didn’t know what to do with it. The last thing they did was the Theraputty in her left and right hands. Mom independently squeezed the putty and Claudia and Ava pulled it. Mom kissed them both good-bye (she does that really well again now).
The speech therapist came in to give us some information about swallowing. What they do at the facility is a type of test where they give mom some food that is dyed---if they see the dye color in either the feeding tube or trach, they know she can’t swallow. The speech person also said that mom needs to imitate certain tongue movements as well in order to eat foods orally. Today, we learned also that, when mom came back to the facility, her vent was on full support. Within the first week, they moved the vent setting down to SMIV (a mid-range setting that allows her to breath on her own alternately with vent support at times as needed). The SMIV vent setting is on 12. It has been on this number for several weeks now. At least mom looks peaceful and content.
When I arrived, mom was sitting in her wheelchair in front of the TV (the Food Channel was on) and she was fast asleep. The nurse came to take her mitts off and mom continued to sleep. The nurse left her “poseys” on her hands (these are the wide, rolled inserts that go inside the mitts so that mom doesn’t curl her hands into fists). Mom seems comforted by holding onto something. Mom slept for a ½ hour and then woke up. I rang the call bell for a suction and 11 minutes later someone came to do it. We used the orange, scrunchy tube first. I put one end of the tube in mom’s right hand and told her to hold on tightly and then I pulled the other end and lifted mom’s arm up, then down, then in and then out. As I moved mom in a direction, I told her the direction verbally as we moved. I also talked into one end of the tube and put the other end to mom’s ear. I said things like, “I love you”… and mom smiled at me as I did this. She also seemed to laugh in her new quiet way too. She definitely liked this game. We tried the hard, solid tubes next---we used them in the same way that we used the orange tube. I gave mom the squeeze toys and placed them in her hands and had her try to squeeze---she couldn’t squeeze without hand over hand assistance. I wrote some sentences on the white board and mom tracked each word with her eyes as if she were reading (left to right) but didn’t mouth anything except, “Today is…” When I left, mom gave me a huge, loud kiss good-bye. Mom is so focused on me now…like never before…it’s like she finds me in the room and gravitates to me immediately after I arrive. Sometimes, it seems to me like mom and I are communicating soul to soul. It’s a strange thing certainly but wonderful at the same time. Maybe mom has entered into the perfect rest of God at last where she is just able to “be” and have joy on some level.
Dad and Terry joined us and they did some range of motion exercise and talked to mom. Dad said that mom moved her arms and head a lot today. After dinner, JoAnn went to be with mom for a while. They did the ‘nuts and bolts’ – hand over hand, the buttons in the slot in the container, the calendar, then mom read Jo’s shirt (Don’t quit 5 minutes before the miracle happens) and raised her eyebrows when she did. JoAnn said that mom held all the items so tightly she had to pry them out of her hands. They read the “All About Me” book, then JoAnn blew bubbles and tried to have mom track them. When JoAnn blew the bubbles at mom, she blinked her eyes and then gave Jo “the look!!” When they were reading, it appeared that mom was reading the words judging by her eye tracking the pages but she didn’t mouth any of the words. One of the nurses told Jo that mom tried to mouth something to her earlier but the nurse couldn’t figure out what it was that she said.
“Here is a trustworthy saying: If we died with him, we will also live with him; if we endure, we will also reign with him.” 2 Timothy 2:14
The speech therapist came in to give us some information about swallowing. What they do at the facility is a type of test where they give mom some food that is dyed---if they see the dye color in either the feeding tube or trach, they know she can’t swallow. The speech person also said that mom needs to imitate certain tongue movements as well in order to eat foods orally. Today, we learned also that, when mom came back to the facility, her vent was on full support. Within the first week, they moved the vent setting down to SMIV (a mid-range setting that allows her to breath on her own alternately with vent support at times as needed). The SMIV vent setting is on 12. It has been on this number for several weeks now. At least mom looks peaceful and content.
When I arrived, mom was sitting in her wheelchair in front of the TV (the Food Channel was on) and she was fast asleep. The nurse came to take her mitts off and mom continued to sleep. The nurse left her “poseys” on her hands (these are the wide, rolled inserts that go inside the mitts so that mom doesn’t curl her hands into fists). Mom seems comforted by holding onto something. Mom slept for a ½ hour and then woke up. I rang the call bell for a suction and 11 minutes later someone came to do it. We used the orange, scrunchy tube first. I put one end of the tube in mom’s right hand and told her to hold on tightly and then I pulled the other end and lifted mom’s arm up, then down, then in and then out. As I moved mom in a direction, I told her the direction verbally as we moved. I also talked into one end of the tube and put the other end to mom’s ear. I said things like, “I love you”… and mom smiled at me as I did this. She also seemed to laugh in her new quiet way too. She definitely liked this game. We tried the hard, solid tubes next---we used them in the same way that we used the orange tube. I gave mom the squeeze toys and placed them in her hands and had her try to squeeze---she couldn’t squeeze without hand over hand assistance. I wrote some sentences on the white board and mom tracked each word with her eyes as if she were reading (left to right) but didn’t mouth anything except, “Today is…” When I left, mom gave me a huge, loud kiss good-bye. Mom is so focused on me now…like never before…it’s like she finds me in the room and gravitates to me immediately after I arrive. Sometimes, it seems to me like mom and I are communicating soul to soul. It’s a strange thing certainly but wonderful at the same time. Maybe mom has entered into the perfect rest of God at last where she is just able to “be” and have joy on some level.
Dad and Terry joined us and they did some range of motion exercise and talked to mom. Dad said that mom moved her arms and head a lot today. After dinner, JoAnn went to be with mom for a while. They did the ‘nuts and bolts’ – hand over hand, the buttons in the slot in the container, the calendar, then mom read Jo’s shirt (Don’t quit 5 minutes before the miracle happens) and raised her eyebrows when she did. JoAnn said that mom held all the items so tightly she had to pry them out of her hands. They read the “All About Me” book, then JoAnn blew bubbles and tried to have mom track them. When JoAnn blew the bubbles at mom, she blinked her eyes and then gave Jo “the look!!” When they were reading, it appeared that mom was reading the words judging by her eye tracking the pages but she didn’t mouth any of the words. One of the nurses told Jo that mom tried to mouth something to her earlier but the nurse couldn’t figure out what it was that she said.
“Here is a trustworthy saying: If we died with him, we will also live with him; if we endure, we will also reign with him.” 2 Timothy 2:14
Saturday, January 15, 2011
mom Update, January 15, 2011, Saturday
Mom’s day began with a visit from Claudia. Claudia did her full range of motion/physical therapy exercises and then mom was taken for a shower. Claudia brought mom’s glasses to be fixed and returned to find mom happily sitting in bed with a peaceful look on her face. Mom lifted her arms again a lot today and made it all the way to her nose!!! Yipppeeee!!! They chatted a bit and Claudia set mom up with the bed tray, magazine, and closed captioned TV. Dad came to see mom next. Dad said he had a sad day today…he felt weepy about mom. Mom and he chatted, watched TV, did physical therapy/range of motion exercises and held hands. Mom lifted her arms a lot again with dad too. This evening, JoAnn, Donna, Tom (cousins) and I all visited with mom. I just stroked her hair and loved on her the whole time. I felt like I hadn’t seen her in forever. She tracked us all, but mostly me. She watched me the whole time. Tom told mom jokes and Donna worked on reading mom the “All About Me” book and she also did the color and shape flashcards. Tom tried to teach mom to communicate by closing and opening her eyes. They said that mom appeared to be trying to do this. When I came back to tuck mom into bed for the night at 9:30 p.m., she was still awake!!! She had been awake ALL DAY! It appears that mom becomes more awake and alert with each passing day. I can’t wait until she gets back to where she was before the incident. Mom and I snuggled and prayed and I took out her hearing aids, took off her glasses, dimmed the lights and kissed her good night. Mom looked so serene…she has a serene and peaceful look about her now, and when I take out the anointing oil to pray, she closes her eyes and lifts her head up in anticipation. I love her so much.
"Love always protects, always trusts, always hopes, always perseveres...: 1 Corinthians 13:7
"Love always protects, always trusts, always hopes, always perseveres...: 1 Corinthians 13:7
Friday, January 14, 2011
Mom Update, January 14, 2011, Friday
Claudia began the day with mom. Mom has a red mark on her pointer finger knuckle on the right hand. They don't think it is because of the mitt or insert. The nurse and the physical therapist looked at it and they are going to put a band-aid on it to prevent further irritation in the mitt. Her left big toe also has had skin break down. The physical therapist put the mitts on mom. Claudia did mom's full physical therapy/range of motion. Mom was asleep when Claudia got there, but woke during exercise. The respiratory therapist came in to look at mom and said her opening for the trach in her neck looked good. He tried to talk to mom but mom couldn't focus on him at first, but then did. Dad saw mom next. He did her full physical therapy/range of motion exercises and then read the "All About Me" book to her and looked at all the family pictures. Then, Carmine (Con and John's cousin, who is a speech therapist) came to visit and evaluate mom. He is returning on Monday as per Dad. Dad said that the head respiratory person told him that he is going to lower mom's SMIV vent settings on Monday. After his comment about mom's sleep apnea...and it being cerebral (wrong information) and not obstructional...I am concerned about mom getting off that darn vent again! Please continue to pray for mom to get off that vent. When JoAnn (she's back!!!) and I saw mom later in the early evening, she was already asleep. Dad tucked mom in tonight. Mom had a happy, content, peaceful day mostly alone with dad....ahhhhhh.
""I am the LORD your God, who teaches you what is best for you, who directs you in the way you should go." Isaiah 48:17
""I am the LORD your God, who teaches you what is best for you, who directs you in the way you should go." Isaiah 48:17
Thursday, January 13, 2011
Mom Update, January 13, 2011, Thursday
Claudia began mom’s day early this morning and mom was wide awake and alert. She set her up in bed, put her hearing aids in and glasses on. She placed the lap table on the bed with a magazine opened to a bread recipe—which mom seemed interested in because she lifted her eyebrows and opened her eyes widely when she looked at it. Claudia put the TV on too. Lenny and I arrived to mom shortly thereafter. She was asleep. As I spoke to her, she tilted her head in my direction and furrowed her brow. I opened her eyes and she looked at me and sort of smiled. She yawned and tried to cover the yawn with her right hand but didn’t quite make it all the way up to her mouth (only made it to just below her neck area). Lenny did mom’s full physical therapy/range of motion exercises. Dad came next and asked mom how she feels, and mom said, “Fine.” Mom smiles (her new slight smile) at dad when he talks to her. Pop has become a strong, respectfully assertive advocate for mom. Our Team Meeting went well. Productive. We came back from the meeting to find that mom was asleep in her chair but both her mitts were on the floor!!! Lenny had pressed the call bell and asked the person who came in to put mom’s gloves back on—the person did that but not well (obviously). We immediately told the Supervisory Nurse who then came in and left to go yell at one of the nurses we love—who didn’t put the mitts on!!! When we told her that—she said she didn’t care—he was in charge!!! The nurse asked us again for us to tell only him to remove and put back on her mitts. Lenny was discouraged and apologized and the nurse told us again to just tell him only. When mom woke up, I worked with her while dad and Lenny went to lunch. Lenny told the nursing supervisor that this is precisely why we are hesitant to tell people in charge about problems we are having because the wrong people are reprimanded.
First, mom and I practiced sitting up straight in her chair. I held her hands and pulled her forward until she was straight. Then I asked her to breath deeply and she did. She smiled a lot and had a sense of accomplishment and pride on her face. She held herself up straight using assistance with one hand (I held one hand). Then she sat straight with my support (holding 2 hands). Mom followed the command to “Take a deep breath” about 4-6 times. She also sat without help, forward in the chair alone. She also sat alone while holding onto the chair with only one hand (I wasn’t helping!!). I left for lunch and dad and Lenny worked with mom. Lenny tried to get mom to do the nut and bolt but she couldn’t. Then Lenny and Dad wrote all the letters of the alphabet on the dry erase board and had mom hold the pen and did hand over hand prompting to write the numbers 1-10 and the whole alphabet. Then they said words for each letter as they drew it. I called JoAnn from mom’s room and she began to talk to mom on the phone. Mom listened intently and then, I asked mom, “Hey, is that JoAnn on the phone?” and mom shook her head “NO” and mouthed it too. I told JoAnn that mom said it wasn’t her and JoAnn said that it wasn’t her – it was her mom, Madeline, on the phone. Then, cousin Angelo called mom and spoke to her on the phone and mom did one of her new smiles as he spoke. After dad and I left, Lenny worked with mom and did the farm animal wooden puzzle, pegs and pegboard (with hand over hand prompting) and flashcards (he showed her the card and then stated the item for her to see and hear). Claudia and I joined Lenny later on and began to show mom pictures of the family---mom smiled a lot at the pictures, especially of the pictures of her and Dad!! We left to eat dinner and Claudia came back later in the evening to relieve Lenny and I. Mom was out like a light asleep. Claudia used this time to do one last physical therapy/range of motion on mom and stretch her really well. She took out mom's hearing aids, and took her glasses off, and tucked her in and prayed over mom.
SOME THOUGHTS CLAUDIA BROUGHT UP: Fifteen minutes before the decanulation of the trach, a CNA saw our mom and she was fine. If mom was double tied and the tube was connected to the trach, how did mom pull the trachh out??? How did she pull it out with the expanded balloon at the bottom??? How was mom able to demonstrate the fine motor ability to be able to pull the trach out???? Especially, since the trach is supposedly also approximately 12-14 inches long---how was mom able to pull out the trach of that length??? Where does the bag go when someone is on a trach??? Over the trach or over the mouth and nose??
"God has surely listened and heard my voice in prayer" Psalm 66:18
Team Care Plan Meeting for Mom MINUTES 1/13/11 Thursday 11:30 a.m.
Present: Kathy, Dad, Lenny, Claudia, plus 8 staff members (PT, Head of Therapies, Head of Respiratory, Head of Nursing, Nutritionist, Recreation Therapist, and 2 Social Workers)
Our concerns:
1. Keep curtain open when we are not there so that she can be viewed from the hallway
2. Make sure the mitts are removed every 2 hours and kept off for 15 minutes as per her plan so that her fingers can be stretched out (CNAs and nurses should stretch them)
3. Can an Occupational Therapist come in to assess the mitts and brainstorm on ways to keep her hands from curling in the mitts
a. Purchase something
b. Use something other than mitts
c. Add something to the mitts
d. NURSING MITTS WITH FINGERS!!!! ASK NURSING!!!!! Finger separater mitt---splint…Gave us long rolls of sand covered in material for inside mitts so mom's hand can only curl so far
4. If anyone walks into room any time after 7:00 a.m. (whether mom is awake or asleep), please open the blinds fully, turn on all lights in the room—we have been trying to establish, and help mom distinguish between, DAY and NIGHT so that we can work with her during the day.
a. Whenever we are not able to get to mom early in the morning and arrive later in the day (twice after 1:00 p.m.), the room is dark and the lights are out, the blinds are closed.
b. DAY/NIGHT difference helps to establish favorable mental health and well-being
5. Can mom receive any type of Occupational Therapy doing hand over hand prompting (full manual prompt)—to model all that we are doing with her?
6. Can mom have a swallow test? Kareem: Modified Barium Swallow Test outside facility
a. Hospital commented that mom is clearly swallowing and able to swallow well---they asked us, “WHY IS SHE ON A FEEDING TUBE??”
7. Change the BEHAVIOR PLAN---remove old derogatory, inaccurate plan from her files!!!
8. If a person cannot advocate for him/herself, is it the role of the ADVOCATE to approve or oversee all such reports
9. Can PT come in and look at the chair mom sits in and find something to keep mom’s feet perpendicular while sitting in the chair so her feet don’t drop? DAN WILL BRING A STOOL
a. Can we put something on the floor for her to lean her feet on? A stool???
10. EXPLAIN THE PLUG and BREATHING SITUATION:
a. Phlegm/Mucus plugs were being dislodged during PT and extra movement (after 6 months of being still)
b. When plug dislodges, the average person is able to cough it up (like with a cold) but the vent patient is not always able to
c. During the TWILIGHT hours, mom was experiencing difficulty dislodging/coughing up plugs and would have a panic attack because a stuck plug blocks all other fluids from being expelled
d. The built-up fluids make the person feel like he/she is drowning----when this happened to mom, she panicked
e. Mom was clammy on her arms and forehead in the evenings and some mornings because of this event
f. The test was to suction her---if she calmed and stabilized after the suctioning, it was a plug and the plug was dislodged
g. Sometimes the plugs needed saline solution to dissolve them then dislodge them (one respiratory person felt uncomfortable doing this the night before the incident of the trach removal)
h. The vent alarm didn’t always go off when this happened at first
11. If any staff member, at any level, has a problem with any of our family members, please address the issue with the particular family member in question—don’t go to another family member to address the concern (ex. Don’t go to dad about Anthony, don’t go to Claudia about Kathy…)
12. How does the trach work??? When trach is pulled out, most often the hole stays open
PILOT BALLOON = cuff at the top of trach gives right amount of air in….it is a tool you use with the trach to inflate/deflate the balloon at the bottom of the trach
: Straight vents…already started weaning modes SMIV times when she breaths over the breath and times when she doesn’t right now she has the opportunity to do so…more often than not, she is not breathing on her own…Obstructive Sleep Apnea can’t occur --- Neurologist said it is NOT Central Sleep Apnea---respiratory therapist (head) says yes--- Neurologist says it is totally Obstructive Sleep Apnea--- Weaning process entails process in breathing without apnea---straight vent to SMIV….she moved to Trach collar….she got to the Trach collar 24/7 due to unknown improvement--- Secretions in this population sometimes lead to infections commonly--- we asked, “How do we prevent this??” Secretions here at facility are different color than in hospital…hospital secretions were more clear. Paradoxical motion from bottom of lung to upper part of lung…
Physically—physical movement can it change her breathing??? They don’t know. All speak only from their own backgrounds. PT/OT was reevaled. When she got here last week---NOTHING….no tracking…but they see improvement in attention and alertness now this week already… physical therapist will watch her and reevaluate weekly… physical therapist plan is to progress her back to wheelchair…and maybe PT again next week or so
It seems to us like the language and cognition is coming back before the phsycial…TELL physical therapist ABOUT PHYSICAL MOVEMENTS!!!!
HEAD NURSE --- Will work on mitts now
COMMONLY bagged to raise levels of breathing----in hospitals and/or in facilities
FACILITY STAFF SAID HER LUNG WAS NOT COLLAPSED AT ALL WHILE IN THE FACILITY---no signs or symptoms in the facility that her lung collapsed.
WHAT happened in transit
A lung can collapse externally or internally---
The facility said no shots were given that day---even though the nurses at the hospital said she wasn’t given anything or a shot…they said to check with the ambulance company….
TELL SOCIAL WORKER ANY PROBLEMS---SHE WILL TAKE CARE OF THEM----ANY PROBLEMS
First, mom and I practiced sitting up straight in her chair. I held her hands and pulled her forward until she was straight. Then I asked her to breath deeply and she did. She smiled a lot and had a sense of accomplishment and pride on her face. She held herself up straight using assistance with one hand (I held one hand). Then she sat straight with my support (holding 2 hands). Mom followed the command to “Take a deep breath” about 4-6 times. She also sat without help, forward in the chair alone. She also sat alone while holding onto the chair with only one hand (I wasn’t helping!!). I left for lunch and dad and Lenny worked with mom. Lenny tried to get mom to do the nut and bolt but she couldn’t. Then Lenny and Dad wrote all the letters of the alphabet on the dry erase board and had mom hold the pen and did hand over hand prompting to write the numbers 1-10 and the whole alphabet. Then they said words for each letter as they drew it. I called JoAnn from mom’s room and she began to talk to mom on the phone. Mom listened intently and then, I asked mom, “Hey, is that JoAnn on the phone?” and mom shook her head “NO” and mouthed it too. I told JoAnn that mom said it wasn’t her and JoAnn said that it wasn’t her – it was her mom, Madeline, on the phone. Then, cousin Angelo called mom and spoke to her on the phone and mom did one of her new smiles as he spoke. After dad and I left, Lenny worked with mom and did the farm animal wooden puzzle, pegs and pegboard (with hand over hand prompting) and flashcards (he showed her the card and then stated the item for her to see and hear). Claudia and I joined Lenny later on and began to show mom pictures of the family---mom smiled a lot at the pictures, especially of the pictures of her and Dad!! We left to eat dinner and Claudia came back later in the evening to relieve Lenny and I. Mom was out like a light asleep. Claudia used this time to do one last physical therapy/range of motion on mom and stretch her really well. She took out mom's hearing aids, and took her glasses off, and tucked her in and prayed over mom.
SOME THOUGHTS CLAUDIA BROUGHT UP: Fifteen minutes before the decanulation of the trach, a CNA saw our mom and she was fine. If mom was double tied and the tube was connected to the trach, how did mom pull the trachh out??? How did she pull it out with the expanded balloon at the bottom??? How was mom able to demonstrate the fine motor ability to be able to pull the trach out???? Especially, since the trach is supposedly also approximately 12-14 inches long---how was mom able to pull out the trach of that length??? Where does the bag go when someone is on a trach??? Over the trach or over the mouth and nose??
"God has surely listened and heard my voice in prayer" Psalm 66:18
Team Care Plan Meeting for Mom MINUTES 1/13/11 Thursday 11:30 a.m.
Present: Kathy, Dad, Lenny, Claudia, plus 8 staff members (PT, Head of Therapies, Head of Respiratory, Head of Nursing, Nutritionist, Recreation Therapist, and 2 Social Workers)
Our concerns:
1. Keep curtain open when we are not there so that she can be viewed from the hallway
2. Make sure the mitts are removed every 2 hours and kept off for 15 minutes as per her plan so that her fingers can be stretched out (CNAs and nurses should stretch them)
3. Can an Occupational Therapist come in to assess the mitts and brainstorm on ways to keep her hands from curling in the mitts
a. Purchase something
b. Use something other than mitts
c. Add something to the mitts
d. NURSING MITTS WITH FINGERS!!!! ASK NURSING!!!!! Finger separater mitt---splint…Gave us long rolls of sand covered in material for inside mitts so mom's hand can only curl so far
4. If anyone walks into room any time after 7:00 a.m. (whether mom is awake or asleep), please open the blinds fully, turn on all lights in the room—we have been trying to establish, and help mom distinguish between, DAY and NIGHT so that we can work with her during the day.
a. Whenever we are not able to get to mom early in the morning and arrive later in the day (twice after 1:00 p.m.), the room is dark and the lights are out, the blinds are closed.
b. DAY/NIGHT difference helps to establish favorable mental health and well-being
5. Can mom receive any type of Occupational Therapy doing hand over hand prompting (full manual prompt)—to model all that we are doing with her?
6. Can mom have a swallow test? Kareem: Modified Barium Swallow Test outside facility
a. Hospital commented that mom is clearly swallowing and able to swallow well---they asked us, “WHY IS SHE ON A FEEDING TUBE??”
7. Change the BEHAVIOR PLAN---remove old derogatory, inaccurate plan from her files!!!
8. If a person cannot advocate for him/herself, is it the role of the ADVOCATE to approve or oversee all such reports
9. Can PT come in and look at the chair mom sits in and find something to keep mom’s feet perpendicular while sitting in the chair so her feet don’t drop? DAN WILL BRING A STOOL
a. Can we put something on the floor for her to lean her feet on? A stool???
10. EXPLAIN THE PLUG and BREATHING SITUATION:
a. Phlegm/Mucus plugs were being dislodged during PT and extra movement (after 6 months of being still)
b. When plug dislodges, the average person is able to cough it up (like with a cold) but the vent patient is not always able to
c. During the TWILIGHT hours, mom was experiencing difficulty dislodging/coughing up plugs and would have a panic attack because a stuck plug blocks all other fluids from being expelled
d. The built-up fluids make the person feel like he/she is drowning----when this happened to mom, she panicked
e. Mom was clammy on her arms and forehead in the evenings and some mornings because of this event
f. The test was to suction her---if she calmed and stabilized after the suctioning, it was a plug and the plug was dislodged
g. Sometimes the plugs needed saline solution to dissolve them then dislodge them (one respiratory person felt uncomfortable doing this the night before the incident of the trach removal)
h. The vent alarm didn’t always go off when this happened at first
11. If any staff member, at any level, has a problem with any of our family members, please address the issue with the particular family member in question—don’t go to another family member to address the concern (ex. Don’t go to dad about Anthony, don’t go to Claudia about Kathy…)
12. How does the trach work??? When trach is pulled out, most often the hole stays open
PILOT BALLOON = cuff at the top of trach gives right amount of air in….it is a tool you use with the trach to inflate/deflate the balloon at the bottom of the trach
: Straight vents…already started weaning modes SMIV times when she breaths over the breath and times when she doesn’t right now she has the opportunity to do so…more often than not, she is not breathing on her own…Obstructive Sleep Apnea can’t occur --- Neurologist said it is NOT Central Sleep Apnea---respiratory therapist (head) says yes--- Neurologist says it is totally Obstructive Sleep Apnea--- Weaning process entails process in breathing without apnea---straight vent to SMIV….she moved to Trach collar….she got to the Trach collar 24/7 due to unknown improvement--- Secretions in this population sometimes lead to infections commonly--- we asked, “How do we prevent this??” Secretions here at facility are different color than in hospital…hospital secretions were more clear. Paradoxical motion from bottom of lung to upper part of lung…
Physically—physical movement can it change her breathing??? They don’t know. All speak only from their own backgrounds. PT/OT was reevaled. When she got here last week---NOTHING….no tracking…but they see improvement in attention and alertness now this week already… physical therapist will watch her and reevaluate weekly… physical therapist plan is to progress her back to wheelchair…and maybe PT again next week or so
It seems to us like the language and cognition is coming back before the phsycial…TELL physical therapist ABOUT PHYSICAL MOVEMENTS!!!!
HEAD NURSE --- Will work on mitts now
COMMONLY bagged to raise levels of breathing----in hospitals and/or in facilities
FACILITY STAFF SAID HER LUNG WAS NOT COLLAPSED AT ALL WHILE IN THE FACILITY---no signs or symptoms in the facility that her lung collapsed.
WHAT happened in transit
A lung can collapse externally or internally---
The facility said no shots were given that day---even though the nurses at the hospital said she wasn’t given anything or a shot…they said to check with the ambulance company….
TELL SOCIAL WORKER ANY PROBLEMS---SHE WILL TAKE CARE OF THEM----ANY PROBLEMS
Wednesday, January 12, 2011
Mom Update, January 12, 2011, Wednesday
Mom had a happy, peaceful day today. She was in bed all day due to short staffing. Dad and Terry saw her early in the day and stayed all afternoon and early evening. They said she looked all around the room and seemed to be more aware of her surroundings. She had a peaceful, calm, happy expression all day as well. They did her full physical therapy/range of motion exercises and Terry put the large balls under her hands to keep her fingers spread apart and open. Terry also opened mom's hands continually as well. Dad called mom a few times and she answered to her name with, "What?" Dad also told mom he loves her and asked if she loves him too and she answered, "I do." She smiled at me with a great smile when she saw me tonight. Lenny and I joined dad and Terry for a bit early in the evening but left to get Lenny home to rest. He is doing really well aside from some expected facial swelling. He rested today while I did the snow blowing...I am exhausted and sore!!! Mom kissed us all good-night and we prayed over her and left.
Some clarification...our family gets along well with all the staff at the facility--they often comment that they feel like they are one of the family--the administration has a difficult time with us because we politely and calmly speak up (the first 99 times or so before getting forceful!!!) on mom's behalf and we can't be fooled by their shinnanagins...!!!! Yes, they feel threatened at times---but not because we threaten them rather because they are insecure about what they do and how they do it. Rule of thumb: If you are doing the job you were hired to do and are doing it to the best of your ability--there's no need to hide, run, get defensive, act in an insecure fashion, attack, cover up ETC!!!!!!!! I had been requesting the 2 documents for over a week and a half before I quoted the law stating that they must produce them within 24 hours. I only wanted to see them to learn about what happened to mom and to be an educated, informed participant at mom's Care Plan meeting on Thursday. What frustrates me the most is that my heart is in a place where I just want to care for my mom and have others do the same to the best of our abilities combined!!! I only want to collaborate and learn and help others along the way. If there are lessons and information to be learned from our experiences, I am the first to share the information on behalf of helping, not only our mom, but other people too!!! We can't do that, any of us, without collaborating openly and in a fashion that doesn't reek of fear and defensiveness!!!!!!! UGH! It is SOOO vitally important to have your family involved in the health care of a loved one. So vital.
(And oh, yeah, the egg throwing at the fence is one of my old remedies, not Lenny's, I just shared it with him a while back and he remembered. He takes good care of me and I him. He is my sunshine truly-- a blessing)
Our Team Meeting is tomorrow. Need I say more or ask for prayer??? hahahaha!!! PRAY. Thanks.
Keep the suggestions coming and insights as well---they help alot!
"Call to me and I will answer you and tell you great and unsearchable things you do not know" Jeremiah 33:3
Some clarification...our family gets along well with all the staff at the facility--they often comment that they feel like they are one of the family--the administration has a difficult time with us because we politely and calmly speak up (the first 99 times or so before getting forceful!!!) on mom's behalf and we can't be fooled by their shinnanagins...!!!! Yes, they feel threatened at times---but not because we threaten them rather because they are insecure about what they do and how they do it. Rule of thumb: If you are doing the job you were hired to do and are doing it to the best of your ability--there's no need to hide, run, get defensive, act in an insecure fashion, attack, cover up ETC!!!!!!!! I had been requesting the 2 documents for over a week and a half before I quoted the law stating that they must produce them within 24 hours. I only wanted to see them to learn about what happened to mom and to be an educated, informed participant at mom's Care Plan meeting on Thursday. What frustrates me the most is that my heart is in a place where I just want to care for my mom and have others do the same to the best of our abilities combined!!! I only want to collaborate and learn and help others along the way. If there are lessons and information to be learned from our experiences, I am the first to share the information on behalf of helping, not only our mom, but other people too!!! We can't do that, any of us, without collaborating openly and in a fashion that doesn't reek of fear and defensiveness!!!!!!! UGH! It is SOOO vitally important to have your family involved in the health care of a loved one. So vital.
(And oh, yeah, the egg throwing at the fence is one of my old remedies, not Lenny's, I just shared it with him a while back and he remembered. He takes good care of me and I him. He is my sunshine truly-- a blessing)
Our Team Meeting is tomorrow. Need I say more or ask for prayer??? hahahaha!!! PRAY. Thanks.
Keep the suggestions coming and insights as well---they help alot!
"Call to me and I will answer you and tell you great and unsearchable things you do not know" Jeremiah 33:3
Tuesday, January 11, 2011
Mom Update, January 11, 2011, Tuesday
Lenny’s surgery was a success!!!! NO NERVE DAMAGE PRAISE THE LORD!!!!!! Thanks for all the prayers. He is fine and resting.
Jean began the day with mom and it was fun and peaceful!! PTL!! She was awake when he arrived but didn’t seem to recognize him (she doesn’t seem to recognize us either since the incident). He put her hearing aids in and washed her face and hands and put her glasses on. He talked to her and used the magna doodle board to write names and words for her to read. He tried to get her to write or even hold the stylus but she couldn’t do it so he did a full manual prompt (hand over hand assistance). He said she appeared to be focused on the TV (it was turned on) at times—more so than on him. When it was time to leave, Jean kissed mom good-bye and then she kissed him back.
Dad and I did mom’s physical therapy/range of motion. Mom also went into the recreation room to listen to a man playing the guitar and singing oldies. People/staff were dancing. Mom mouthed some of the words to the songs he played (as per dad and some of the staff). She was even smiling at times. Dad said that mom was breathing way over the vent yesterday. She smiled at me when she saw me today too (very slightly but a definite smile).
Dad and I were given a copy of mom’s Care Plan. We reviewed it but it didn’t seem to be complete. We were told, by the person from Medical Records, that it is complete and that Care Plans are only updated quarterly otherwise they stay the same and unchanged. This is why most of October and November were missing. In the Plan, we did find a disturbing report. It was a behavior report that, we found out, was written by the Nursing Supervisor. She wrote the care plan regarding mom’s behavior. This Behavior Plan was written on the day that I arrived in the morning and found mom sitting in her bed with the blue pilot trach balloon in her hand. Because of this occurrence---it is written on her Care Plan that she is a threat to herself and others---potentially!!!!!!!! It also says that she “resisted care.” We don’t know HOW this pilot balloon was removed or broken—it already was off---no one saw mom break it off. Also we have had many instances of carelessness with some of her CNAs and nurses so it is possible to us that one of them ripped the pilot balloon off and then left it on the bed where mom found it. We just don’t know. The Assistant to the Director of the Respiratory Unit was given the piece by me---she panicked and asked where it came from and whose it was??? An alarm should have sounded but didn’t (or was ignored) and I said to this therapist, “Well, thank God Mom is OK and breathing alright. Is that why the alarm didn’t sound?” The language used in the Care Plan is VERY STRONG!!! Or it seems to be strong… I am going to include a copy of the report here. You make the judgment. Here is some of the information on the form that is checked off (mom’s first and last name is at the top of the form):
Monitor interactions with others
Monitor for signs of injury to self or others
Monitor for confrontational behavior
Praise for appropriate responses to others and safe interactions
Goals: Resident will demonstrate safe and appropriate social boundaries daily for 3 months
Goal: Resident will remain free from injury daily for 3 months
The form already has typed and hand-written information on it---the handwritten information looks like it was written on because it pertains to the person in question---misleading. Also there are items on the Plan page that are checked off---HOWEVER the check marks DO NOT mean that they apply to the person who’s name is at the top of the form necessarily---it only applies when there is a date next to an item---if no date, but checked off, it doesn’t apply to the person. The title on the Behavior Plan says--- “Potential risk for injury 2 degree cognitive impairments of self and others inability to comprehend personal boundaries and poor impulse control.”
Dad and I were told that the form is just a blanket form used for anyone with ANY type of behavior with the same format etc. with the SAME ITEMS CHECKED OFF--- evidently, the head nurse has her own system of tracking what applies to the patient on the form---if the item has a date next to it, then it means the item applies to the patient. If there is only a check mark next to an item, it doesn’t apply to the patient.
IF A FAMILY DOES NOT LOOK AT THIS FORM BY ASKING FOR IT---then what is written on the form applies.
As I was repeating myself for the 13th time, the facility social worker began to say to me, “I hear you” to which I replied, “Thanks for the psychologize that you are speaking to me in but I too have a background in psych and don’t need the counseling session or the confirmatory paraphrasing or the words of validation…but what I want is ACKNOWLEDGEMENT that what I am saying is true!! And that it is a careless, ludicrous system to use. This misrepresents the patient in question in a way that is dangerously misleading.”
When I told the Social Worker that they had the opportunity to prepare for mom’s meeting on Thursday, as a facility team today, and that we are just asking for the same opportunity but not being afforded that, she just listened. I told her that this form represents someone who cannot represent or stand up for him/herself...that it is a dangerous form with dangerous comments on it. If a psychiatrist saw it in mom's folder, would she be prescribed medication? Would she be restrained more than she is already?????!!!!! God help the system we have in this country....it is toxic.
At the meeting, at 5:22, the building administrator said that he didn’t want to give permission to be recorded during the meeting we were about to have. He wanted to have someone on the phone listening to our conversation last night with dad (a CEO of the facility). We asked again to see the Incident Report and he said no. but as Claudia spoke and mentioned an attorney, he said it is under debate with all such facilities as to whether or not let the families of the patients see such Incident Reports (investigations included). We then told we couldn’t see, then we were told we could see it. The Administrator then told us that we are an inappropriately aggressive family…all of us. That we are all sarcastic and have problems with many people at the facility. He said that he has received reports from multiple people about us all and particularly about Claudia and me regarding our inappropriate behavior. We brought up the Behavior Plan for mom and the inappropriate language and descriptions in it. Then we asked to have the report amended—we were told OK, no problem…but that the original report would remain in mom’s file and not be destroyed as dad asked. Dad and the building administrator fought over this or debated and dad finally said that if it stays in mom’s folder or file then it needs to have the word VOID stamped across it in red letters. The people in charge here either play dumb so much or act in such a passively aggressive manner that they push people into a defensive corner—which is what they want…and then they deny any part in the reactions they provoke. Some of people in our family have been pushed to places of sheer frustration…others remain focused and in control…I kept it together so far into the meeting but then realized it was spinning wildly out of control and had to leave. Claudia and Dad finished the meeting in a productive manner…I left and called some people to pray and then began to pray myself for dad and Claudia. When I came home, Lenny asked me to take him to the Deli after hearing about the events of the meeting and report and he said he was going to surprise me with something that would be good for both of us…he bought a dozen eggs and we went home together and stood in the back yard and, holding a half dozen each, (true confessions) we threw them at our fence…couldn’t exercise or play a sport in the weather to blow off the steam…but this felt great. To think this all started because we wanted to see 2 reports so that we could a part of mom’s Care Plan Team in an educated, informed way.
“bless those who curse you, pray for those who mistreat you.” Luke 6:28
(This is the challenge set before us…)
Jean began the day with mom and it was fun and peaceful!! PTL!! She was awake when he arrived but didn’t seem to recognize him (she doesn’t seem to recognize us either since the incident). He put her hearing aids in and washed her face and hands and put her glasses on. He talked to her and used the magna doodle board to write names and words for her to read. He tried to get her to write or even hold the stylus but she couldn’t do it so he did a full manual prompt (hand over hand assistance). He said she appeared to be focused on the TV (it was turned on) at times—more so than on him. When it was time to leave, Jean kissed mom good-bye and then she kissed him back.
Dad and I did mom’s physical therapy/range of motion. Mom also went into the recreation room to listen to a man playing the guitar and singing oldies. People/staff were dancing. Mom mouthed some of the words to the songs he played (as per dad and some of the staff). She was even smiling at times. Dad said that mom was breathing way over the vent yesterday. She smiled at me when she saw me today too (very slightly but a definite smile).
Dad and I were given a copy of mom’s Care Plan. We reviewed it but it didn’t seem to be complete. We were told, by the person from Medical Records, that it is complete and that Care Plans are only updated quarterly otherwise they stay the same and unchanged. This is why most of October and November were missing. In the Plan, we did find a disturbing report. It was a behavior report that, we found out, was written by the Nursing Supervisor. She wrote the care plan regarding mom’s behavior. This Behavior Plan was written on the day that I arrived in the morning and found mom sitting in her bed with the blue pilot trach balloon in her hand. Because of this occurrence---it is written on her Care Plan that she is a threat to herself and others---potentially!!!!!!!! It also says that she “resisted care.” We don’t know HOW this pilot balloon was removed or broken—it already was off---no one saw mom break it off. Also we have had many instances of carelessness with some of her CNAs and nurses so it is possible to us that one of them ripped the pilot balloon off and then left it on the bed where mom found it. We just don’t know. The Assistant to the Director of the Respiratory Unit was given the piece by me---she panicked and asked where it came from and whose it was??? An alarm should have sounded but didn’t (or was ignored) and I said to this therapist, “Well, thank God Mom is OK and breathing alright. Is that why the alarm didn’t sound?” The language used in the Care Plan is VERY STRONG!!! Or it seems to be strong… I am going to include a copy of the report here. You make the judgment. Here is some of the information on the form that is checked off (mom’s first and last name is at the top of the form):
Monitor interactions with others
Monitor for signs of injury to self or others
Monitor for confrontational behavior
Praise for appropriate responses to others and safe interactions
Goals: Resident will demonstrate safe and appropriate social boundaries daily for 3 months
Goal: Resident will remain free from injury daily for 3 months
The form already has typed and hand-written information on it---the handwritten information looks like it was written on because it pertains to the person in question---misleading. Also there are items on the Plan page that are checked off---HOWEVER the check marks DO NOT mean that they apply to the person who’s name is at the top of the form necessarily---it only applies when there is a date next to an item---if no date, but checked off, it doesn’t apply to the person. The title on the Behavior Plan says--- “Potential risk for injury 2 degree cognitive impairments of self and others inability to comprehend personal boundaries and poor impulse control.”
Dad and I were told that the form is just a blanket form used for anyone with ANY type of behavior with the same format etc. with the SAME ITEMS CHECKED OFF--- evidently, the head nurse has her own system of tracking what applies to the patient on the form---if the item has a date next to it, then it means the item applies to the patient. If there is only a check mark next to an item, it doesn’t apply to the patient.
IF A FAMILY DOES NOT LOOK AT THIS FORM BY ASKING FOR IT---then what is written on the form applies.
As I was repeating myself for the 13th time, the facility social worker began to say to me, “I hear you” to which I replied, “Thanks for the psychologize that you are speaking to me in but I too have a background in psych and don’t need the counseling session or the confirmatory paraphrasing or the words of validation…but what I want is ACKNOWLEDGEMENT that what I am saying is true!! And that it is a careless, ludicrous system to use. This misrepresents the patient in question in a way that is dangerously misleading.”
When I told the Social Worker that they had the opportunity to prepare for mom’s meeting on Thursday, as a facility team today, and that we are just asking for the same opportunity but not being afforded that, she just listened. I told her that this form represents someone who cannot represent or stand up for him/herself...that it is a dangerous form with dangerous comments on it. If a psychiatrist saw it in mom's folder, would she be prescribed medication? Would she be restrained more than she is already?????!!!!! God help the system we have in this country....it is toxic.
At the meeting, at 5:22, the building administrator said that he didn’t want to give permission to be recorded during the meeting we were about to have. He wanted to have someone on the phone listening to our conversation last night with dad (a CEO of the facility). We asked again to see the Incident Report and he said no. but as Claudia spoke and mentioned an attorney, he said it is under debate with all such facilities as to whether or not let the families of the patients see such Incident Reports (investigations included). We then told we couldn’t see, then we were told we could see it. The Administrator then told us that we are an inappropriately aggressive family…all of us. That we are all sarcastic and have problems with many people at the facility. He said that he has received reports from multiple people about us all and particularly about Claudia and me regarding our inappropriate behavior. We brought up the Behavior Plan for mom and the inappropriate language and descriptions in it. Then we asked to have the report amended—we were told OK, no problem…but that the original report would remain in mom’s file and not be destroyed as dad asked. Dad and the building administrator fought over this or debated and dad finally said that if it stays in mom’s folder or file then it needs to have the word VOID stamped across it in red letters. The people in charge here either play dumb so much or act in such a passively aggressive manner that they push people into a defensive corner—which is what they want…and then they deny any part in the reactions they provoke. Some of people in our family have been pushed to places of sheer frustration…others remain focused and in control…I kept it together so far into the meeting but then realized it was spinning wildly out of control and had to leave. Claudia and Dad finished the meeting in a productive manner…I left and called some people to pray and then began to pray myself for dad and Claudia. When I came home, Lenny asked me to take him to the Deli after hearing about the events of the meeting and report and he said he was going to surprise me with something that would be good for both of us…he bought a dozen eggs and we went home together and stood in the back yard and, holding a half dozen each, (true confessions) we threw them at our fence…couldn’t exercise or play a sport in the weather to blow off the steam…but this felt great. To think this all started because we wanted to see 2 reports so that we could a part of mom’s Care Plan Team in an educated, informed way.
“bless those who curse you, pray for those who mistreat you.” Luke 6:28
(This is the challenge set before us…)
Monday, January 10, 2011
Mom Update, January 10, 2011, Monday
Claudia began mom’s day with her this morning. As Claudia did mom’s physical therapy/range of motion exercises, she put on Channel 7 News. A commercial for dog food came on and the announcer was speaking about dogs and nutrition and, while he spoke, a bag of BENEFUL dog food was on the TV screen. Mom was watching and read the word, “BENEFUL.” Claudia praised her!! Later, a report about the Congress woman in Arizona came on and it showed flowers at the White House. Mom put a concerned look on her face and asked, “What?” Claudia reassured her and changed the channel. Claudia came up with the idea that we are going to leave the CLOSED CAPTIONING on the TV from now on so that mom can read the screen. Leave it to Claudia!! She thinks of everything, thank God! Claudia left for work and left mom with the tray table on her lap, an open magazine with a lot of writing on it, and the TV on Channel 7. We are going to start to use some of the EYE WITNESS reading series books for children with mom because they have pictures and coinciding words. Dad and Aunt Carol came to see mom next. Dad said mom was awake and alert. She moved her left foot once and she moved her left and right arms a bit. She tried to touch her nose with her right hand but didn’t quite make it. Each day, she gets closer to her target and lifts her arm a little higher. A woman came to see mom with a keyboard and sang songs. Aunt Carol sang along and tried to move mom’s arms in time to the music. Dad and Aunt Carol left mom awake and looking at TV – The Food Channel.
Now for the nuts and bolts again. I called the Medical Records Department of the facility this morning to request mom’s care plan (a copy of it) and the ability to view the incident report from 12/22 before Thursday’s meeting. I was told by the person in Medical Records that she would make copies for me but it would take 2-3 days to do (against the law---I must have in my hand within 24 hours of requesting). She mentioned nothing about the Incident Report. Claudia made a call to the attorney she found and he informed us that CODE SECTION 42 Code of Federal Regulation 483.10 (B) (2) states that family is allowed, in some cases copies of, and in other cases, access to medical records within 24 hours of requesting them. I called the person in Medical Records back again and requested that the copies of the Care Plan be ready before Thursday and that we review the Incident Report before then as well (incident report is an internal document—can’t have copies but CAN review it). She said not possible, so I quoted the law and the attorney’s name; she said she would have the Care Plan copied and ready on Wednesday…but no access to Incident Report. I called back to say that there is a blizzard expected Wednesday so we need it on Tuesday—she said no, I quoted law and she said OK but still wouldn’t budge on the Incident Report. I told Dad to go sign for the records (instead of me as discussed with the medical records person) and she told dad no need to sign because his daughter is coming to sign!! I caught dad by phone before he left and told him to go sign. I called her back and told her to let dad sign. Dad signed and also went to the Building Administrator as I told him to do. I texted the Building Administrator and asked for everything and cited the law. The Building Administrator got the Social Worker and met and then met with Dad. THREE AND ONE HALF HOURS AFTER THE FIRST CALL WAS MADE…He is going over all the records with us tomorrow afternoon. PHEW!!!! WHY DOES IT HAVE TO BE SO HARD????!!!!!! What do people do who don’t know this???!!! I was very calm and polite with each person I spoke to but wow what a system!!
Con, Sammy, Anthony Michael and Dad saw mom tonight. She was still awake when they got there!! Record breaker!! They were all upset at first because they couldn’t find her eyeglasses –but then they found them on the floor behind the vent. It would be so great if MOM threw them on the floor or knocked them off her face!! We don’t know though. Dad said that mom reached her nose with her right hand tonight!!! YIPPEEE!!! He said she moved both her arms a lot and moved her feet a lot too. They did her full physical therapy/range of motion exercises and talked with mom. They watched TV too. Mom fell asleep soon after they arrived. They tucked her in and prayed with her and readied her for bed and left.
Reminders: Please pray for Lenny tomorrow – surgery at 7:15 a.m. Pray all goes well and that there will be no nerve damage.
ALSO: Jean is going to wake up and be with mom tomorrow morning---He asks that you all pray for a peaceful, joyful time with mom---not like the last time he went to start her day with her.
“ For in Him we live and move and have our being.” Acts 17:28
Now for the nuts and bolts again. I called the Medical Records Department of the facility this morning to request mom’s care plan (a copy of it) and the ability to view the incident report from 12/22 before Thursday’s meeting. I was told by the person in Medical Records that she would make copies for me but it would take 2-3 days to do (against the law---I must have in my hand within 24 hours of requesting). She mentioned nothing about the Incident Report. Claudia made a call to the attorney she found and he informed us that CODE SECTION 42 Code of Federal Regulation 483.10 (B) (2) states that family is allowed, in some cases copies of, and in other cases, access to medical records within 24 hours of requesting them. I called the person in Medical Records back again and requested that the copies of the Care Plan be ready before Thursday and that we review the Incident Report before then as well (incident report is an internal document—can’t have copies but CAN review it). She said not possible, so I quoted the law and the attorney’s name; she said she would have the Care Plan copied and ready on Wednesday…but no access to Incident Report. I called back to say that there is a blizzard expected Wednesday so we need it on Tuesday—she said no, I quoted law and she said OK but still wouldn’t budge on the Incident Report. I told Dad to go sign for the records (instead of me as discussed with the medical records person) and she told dad no need to sign because his daughter is coming to sign!! I caught dad by phone before he left and told him to go sign. I called her back and told her to let dad sign. Dad signed and also went to the Building Administrator as I told him to do. I texted the Building Administrator and asked for everything and cited the law. The Building Administrator got the Social Worker and met and then met with Dad. THREE AND ONE HALF HOURS AFTER THE FIRST CALL WAS MADE…He is going over all the records with us tomorrow afternoon. PHEW!!!! WHY DOES IT HAVE TO BE SO HARD????!!!!!! What do people do who don’t know this???!!! I was very calm and polite with each person I spoke to but wow what a system!!
Con, Sammy, Anthony Michael and Dad saw mom tonight. She was still awake when they got there!! Record breaker!! They were all upset at first because they couldn’t find her eyeglasses –but then they found them on the floor behind the vent. It would be so great if MOM threw them on the floor or knocked them off her face!! We don’t know though. Dad said that mom reached her nose with her right hand tonight!!! YIPPEEE!!! He said she moved both her arms a lot and moved her feet a lot too. They did her full physical therapy/range of motion exercises and talked with mom. They watched TV too. Mom fell asleep soon after they arrived. They tucked her in and prayed with her and readied her for bed and left.
Reminders: Please pray for Lenny tomorrow – surgery at 7:15 a.m. Pray all goes well and that there will be no nerve damage.
ALSO: Jean is going to wake up and be with mom tomorrow morning---He asks that you all pray for a peaceful, joyful time with mom---not like the last time he went to start her day with her.
“ For in Him we live and move and have our being.” Acts 17:28
Sunday, January 9, 2011
Mom Update, January 9, 2011, Sunday
When Claudia arrived to start the day with mom this morning, she said, “Hey! Good Morning, Morning Glory” and mom mouthed, “Morning.” Claudia did the “All About Me” book with mom today. She kept the page open and in front of mom for a long while in order to catch her attention. Mom seemed to be reading judging her eye movement and she also mumbled with her mouth while looking at the pages. Then she did mom's range of motion/physical therapy and then they spent the next half hour watching, "The Electric Company" (a 60s or 70s children's show about literacy concepts). They did the IPAD with the VERBS and then Claudia did the orange accordion tube with mom. Claudia held the tube closed and gathered and then she would have mom squeeze the end of the tube while Claudia pulled the tube open. They did this to the “Night in Vienna” waltz music and she also had mom wave the tube back and forth to the music with help. Claudia did the blue tube with mom where mom holds the tube in the center and Claudia holds both ends and we pull the tube upward while mom holds on to raise her arms up and down. Then Claudia did the “Sounds Outside” and Claudia said, “That’s a bird” and mom said, “I know.” At one point, Claudia asked mom, “What’s the matter?” and Mom said, “Nothing.” Then Claudia played the sound of the boat motor and showed her the picture, and mom said, “That one…” but Claudia couldn’t understand what she said. Mom repeated it over and over. Claudia asked mom to choose whether she wanted to watch on TV using picture cues---Food Network or BABE but mom couldn’t make the choice --- all she could do was to look at whatever was on the right, not what was on the left. Claudia moved mom’s chair very close to the TV and put headphones on mom and she really watched the movie, BABE. Mom watched the entire movie and very rarely did her eyes leave the screen. Maureen, Flo, and Flo came to see mom next and Claudia said, “Say Hello” and mom said, “Lo” and they all heard it. Then Claudia wrote their names one at a time on the white board and put the board next to the person and said their name. Then the CNA moved mom back to bed. I arrived just as mom was done being moved into bed and Claudia told me of the day’s events. I said hello to mom but she was glazed over---sleepy. An hour after my arrival, she was out like a light. I sat with her while she slept and then I left and came back later to tuck her in and pray.
Just as a reminder: Lenny’s surgery for the possible cyst in his jaw bone is on Tuesday at 7:15 a.m. so please remember him in prayer…that all goes well and no nerve damage is done. Thanks so much.
“You need to persevere so that when you have done the will of God, you will receive what he has promised.” Hebrews 10:36
Just as a reminder: Lenny’s surgery for the possible cyst in his jaw bone is on Tuesday at 7:15 a.m. so please remember him in prayer…that all goes well and no nerve damage is done. Thanks so much.
“You need to persevere so that when you have done the will of God, you will receive what he has promised.” Hebrews 10:36
Saturday, January 8, 2011
Mom Update, January 8, 2011, Saturday
I started the day with mom this morning. I put on the Tchaikovsky tape and we did her physical therapy/range of motion exercises. I put her hearing aids in and her glasses on and adjusted the bed. Her CNA said she’d wait to give her a shower until I worked with her because she said she wanted mom to be alert for me and her work. The aide said that mom was wide awake at 7 a.m. this morning. She was awake but not as alert as yesterday. She did focus on me, but she kept her head tilted up a lot. Con, Anthony Michael and Sam came to see mom with me next and they helped me finish her physical therapy. Mom gave Con and Anthony Michael a kiss. She also tried to smile for Con when Con asked her to. Mom also mouthed, “What” a few times when we called her. I explained where mom is now and which activities to do with her now—books: read to her and show her the pictures, bubbles: tracking with her eyes, Sounds Around the House and Outdoor Sounds: auditory awareness, Tactile Awareness: things to feel and identify for her (material, rough objects…), balls under her hands, IPAD: any of the programs that show pictures and name them. Each person can also work on 1 specific command as well until the command is mastered: Anthony Michael –Wiggle your toes, Con-Smile, Sammy-Clasp your hands together, Kathy-Open/Close your hands, Lenny-Look at me…
I also had a conversation with one of the really nice respiratory therapists about the events of the incident back on the 22nd. Though she didn’t know details, and heard a few scattered stories, she did clarify for me that, when someone is on a vent, there can be blockages or plugs in the lungs (these are the hardened pieces of phlegm) that can become dislodged. When the plugs get dislodged (by movement, coughing, adding saline solution…), they can sometimes come up in a cough or get stuck in an airway. When the plugs get stuck, a person feels like he/she is drowning. From the therapist’s perspective, in an emergency, a person on a vent is sometimes “bagged” (this is when the respiratory therapist uses an item that has a round, big hollow ball at the bottom and a mask at the top—mask goes over person’s face and the ball is squeezed to force air into the airways) even though the vent is working and he/she is breathing. This is done for a variety of reasons—to either dislodge a plug, locate a plug so that it can be dislodged, or to provide more air for a patient to breath. A vent patient is sometimes “bagged” even though he/she is continuing to breath.
Mom was in the chair after her shower and we had to raise the back of the chair because she was too reclined as she was. Her feet, though in her sneakers, were just dangling too, so Con thought it would be good if we bought a small step stool to rest her feet on. We found an old TV box in her room and rested her feet on that in the meantime. As we visited with mom, she tried to talk a few times. She said, “What do you want” “What happened” “What.” Anthony Michael and I used the long, plastic tubes to have mom grab them and pull against us to strengthen her arms. I did the calendar with mom next. We are trying now to get her to have a sense of time—we go over the date, day, month, and year each day. Then Con and the kids left and I worked on the IPAD with mom. First, we did FRUITS AND NUTS, then we did VEGETABLES, THINGSTO EAT, ACTIONS, and then we read some books on it (Toot and Puddle series about 2 adorable piggies). At one point while we were reading, mom needed a suction so I rang the call bell—it took 13 minutes for someone to respond…big difference between weekend staff and weekly staff. I just checked my phone and saw a message on it from the facility Social Worker who is saying that we cannot be given any report of what happened to mom on the 22nd because it is an internal report and that she made a request to Medical Records for a copy of mom’s current Care Report. This doesn’t sound correct, but we will check it out. One of our family members made phone calls to the hospital yesterday and found out that the records there could be sent to mom’s neurologist yesterday---she prodded and pushed and was able to get this for us. However, all of the hospital records in total won’t be at Medical Records for another week—at that time, we can push to get copies sooner than a week (either .25 or .75 a copy!!!). The same family member made a call to the ambulance company that transported mom to the hospital that day---I got their phone number but didn’t have time to call since dad and Anthony are sick and Con has been busy with the kids---just me and Claudia on call all week!—anyway, she found out that usually, only an attorney could request their records but the woman she spoke to said she’d do what she could to get us the records. We call both places back in a week. Though the lawyer Claudia spoke to felt that we didn’t have a case with mom’s incident (we have the burden of proof to show she is worse now then before and that her present decline is definitely from the incident – which was about 4 minutes long, if that). We are allowed by law to “see” the reports but we can’t have a physical copy (only a lawyer would get that in the event of a suit—which it appears we don’t have). The social worker at the facility also asked whether and/or who made the meeting for mom on the 11th when our meeting is scheduled for the 13th. I told her it wasn’t us but that perhaps she just ‘spilled the beans’ because maybe there is a facility meeting on Tuesday to discuss the meeting on Thursday before it happens. The social worker also asked me if it was alright if she introduced us to another family who is fed up with the system and wants to help their loved one but doesn’t know how to. I told her it would be fine to do that.
Claudia and John and Lenny came next and the guys were on either side of mom trying to get her to “Look at me” so Claudia invited a new therapy called, “Ping Pong Nonny”—where she has to look from one person to another!! Only Claudia! Hahaha!! Claudia did her full physical therapy. Mom said, “Oh my God” when Claudia worked on her arms. Mom tried to cover her mouth while she yawned and almost touched her mouth with her right hand! Claudia did “Sounds around the House” and “Outdoor Sounds” and then the Color Cards with mom (she shows her a card with a colored rectangle on it and the color word and asks “What color?”). Claudia began each activity with, “Are you ready?” and mom said, “Yes” every time. Claudia did the pegboard with mom but though mom was able to complete the pegboard in its entirety before all this happened, she could even pick up a peg or hold it in her hand now. Claudia completed it with a full manual prompt-hand over hand. Mom fell asleep at 3:15 p.m. Claudia and John left at 3:45 and I left shortly after that. I returned twice to check on mom (once at 7:00 p.m. and again at 10:00 p.m.) she was sleeping soundly both times. I prayed over her and tucked her in for the night. Tomorrow we begin anew.
It has been hard this week to see the progress mom lost since the incident and to see how far back she is now. It breaks my heart and sometimes even bruises my spirit. Each day, I try to focus only on that particular day...not before and not after it...but it is hard for me to do sometimes. One day at a time.
"Be strong and courageous. Do not be afraid or discouraged because of the king of Assyria and the vast army with him, for there is a greater power with us than with him." 2 Chronicles 32:7
PS I thought of this scripture verse and quoted it but I looked up the part about the king of Assyria...and in the Hebrew, the word Assyria is substituted for another word that means: contend >verb 1 (contend with/against) struggle to deal with (a difficulty). 2 (contend for) engage in a struggle or campaign to achieve. 3 assert as a position in an argument. All I can say is WOW God does speak to us.
I also had a conversation with one of the really nice respiratory therapists about the events of the incident back on the 22nd. Though she didn’t know details, and heard a few scattered stories, she did clarify for me that, when someone is on a vent, there can be blockages or plugs in the lungs (these are the hardened pieces of phlegm) that can become dislodged. When the plugs get dislodged (by movement, coughing, adding saline solution…), they can sometimes come up in a cough or get stuck in an airway. When the plugs get stuck, a person feels like he/she is drowning. From the therapist’s perspective, in an emergency, a person on a vent is sometimes “bagged” (this is when the respiratory therapist uses an item that has a round, big hollow ball at the bottom and a mask at the top—mask goes over person’s face and the ball is squeezed to force air into the airways) even though the vent is working and he/she is breathing. This is done for a variety of reasons—to either dislodge a plug, locate a plug so that it can be dislodged, or to provide more air for a patient to breath. A vent patient is sometimes “bagged” even though he/she is continuing to breath.
Mom was in the chair after her shower and we had to raise the back of the chair because she was too reclined as she was. Her feet, though in her sneakers, were just dangling too, so Con thought it would be good if we bought a small step stool to rest her feet on. We found an old TV box in her room and rested her feet on that in the meantime. As we visited with mom, she tried to talk a few times. She said, “What do you want” “What happened” “What.” Anthony Michael and I used the long, plastic tubes to have mom grab them and pull against us to strengthen her arms. I did the calendar with mom next. We are trying now to get her to have a sense of time—we go over the date, day, month, and year each day. Then Con and the kids left and I worked on the IPAD with mom. First, we did FRUITS AND NUTS, then we did VEGETABLES, THINGSTO EAT, ACTIONS, and then we read some books on it (Toot and Puddle series about 2 adorable piggies). At one point while we were reading, mom needed a suction so I rang the call bell—it took 13 minutes for someone to respond…big difference between weekend staff and weekly staff. I just checked my phone and saw a message on it from the facility Social Worker who is saying that we cannot be given any report of what happened to mom on the 22nd because it is an internal report and that she made a request to Medical Records for a copy of mom’s current Care Report. This doesn’t sound correct, but we will check it out. One of our family members made phone calls to the hospital yesterday and found out that the records there could be sent to mom’s neurologist yesterday---she prodded and pushed and was able to get this for us. However, all of the hospital records in total won’t be at Medical Records for another week—at that time, we can push to get copies sooner than a week (either .25 or .75 a copy!!!). The same family member made a call to the ambulance company that transported mom to the hospital that day---I got their phone number but didn’t have time to call since dad and Anthony are sick and Con has been busy with the kids---just me and Claudia on call all week!—anyway, she found out that usually, only an attorney could request their records but the woman she spoke to said she’d do what she could to get us the records. We call both places back in a week. Though the lawyer Claudia spoke to felt that we didn’t have a case with mom’s incident (we have the burden of proof to show she is worse now then before and that her present decline is definitely from the incident – which was about 4 minutes long, if that). We are allowed by law to “see” the reports but we can’t have a physical copy (only a lawyer would get that in the event of a suit—which it appears we don’t have). The social worker at the facility also asked whether and/or who made the meeting for mom on the 11th when our meeting is scheduled for the 13th. I told her it wasn’t us but that perhaps she just ‘spilled the beans’ because maybe there is a facility meeting on Tuesday to discuss the meeting on Thursday before it happens. The social worker also asked me if it was alright if she introduced us to another family who is fed up with the system and wants to help their loved one but doesn’t know how to. I told her it would be fine to do that.
Claudia and John and Lenny came next and the guys were on either side of mom trying to get her to “Look at me” so Claudia invited a new therapy called, “Ping Pong Nonny”—where she has to look from one person to another!! Only Claudia! Hahaha!! Claudia did her full physical therapy. Mom said, “Oh my God” when Claudia worked on her arms. Mom tried to cover her mouth while she yawned and almost touched her mouth with her right hand! Claudia did “Sounds around the House” and “Outdoor Sounds” and then the Color Cards with mom (she shows her a card with a colored rectangle on it and the color word and asks “What color?”). Claudia began each activity with, “Are you ready?” and mom said, “Yes” every time. Claudia did the pegboard with mom but though mom was able to complete the pegboard in its entirety before all this happened, she could even pick up a peg or hold it in her hand now. Claudia completed it with a full manual prompt-hand over hand. Mom fell asleep at 3:15 p.m. Claudia and John left at 3:45 and I left shortly after that. I returned twice to check on mom (once at 7:00 p.m. and again at 10:00 p.m.) she was sleeping soundly both times. I prayed over her and tucked her in for the night. Tomorrow we begin anew.
It has been hard this week to see the progress mom lost since the incident and to see how far back she is now. It breaks my heart and sometimes even bruises my spirit. Each day, I try to focus only on that particular day...not before and not after it...but it is hard for me to do sometimes. One day at a time.
"Be strong and courageous. Do not be afraid or discouraged because of the king of Assyria and the vast army with him, for there is a greater power with us than with him." 2 Chronicles 32:7
PS I thought of this scripture verse and quoted it but I looked up the part about the king of Assyria...and in the Hebrew, the word Assyria is substituted for another word that means: contend >verb 1 (contend with/against) struggle to deal with (a difficulty). 2 (contend for) engage in a struggle or campaign to achieve. 3 assert as a position in an argument. All I can say is WOW God does speak to us.
Friday, January 7, 2011
Mom Update, January 7, 2011, Friday
Claudia went in to see mom and put her stuff down and went to the nurses and said "I need my mom's hearing aids and somebody needs to take off her mitts." The head nurse followed her and someone yelled into the hall and asked a respiratory therapist who the therapist was on the wing today and he named someone and laughed snidely and was admonished for it in front of Claudia. Claudia didn't know if the therapist was giving us the name of someone or if he was making fun of us and mom's situation. Claudia did mom's full physical therapy/range of motion today and also put her hands on the balls to keep them open. Claudia also put the large 10 inch ball under her knee but mom could not lift her leg. Claudia also read the "Getting Better" story with mom. Mom was very awake and alert for Claudia this morning. Claudia said that mom also opened her mouth on command for the nurse to swab her mouth out. Claudia also did the calendar with mom.
When I arrived to see mom today, I was told she was in the “dining room.” This is the room where many of the recreational activities take place—however, today there were no activities in this room. Mom was placed there along with 2 other patients because she and they are considered to be “high risk” patients who need continual monitoring (as per her CNA). I was told that mom will be moved to this room every day until around 2-4 p.m. because there will be an assigned CNA in that room watching and monitoring these patients. Being in one room makes it easier to monitor them. Mom is allowed to be in this room without the mitts on her hands…she allowed to move freely. This is the idea behind her being in this room. I am allowed to move mom back to her room while I visit (but I didn’t request that because it is complicated to move a person and her vent along with her. I was also told that, if a family member is with the person, then the person is left in the dining room and no CNA is needed. Mom is very alert right now. She is staring at me and watching what I am doing and I think she even said my name, “Kathy…” and something else but I couldn’t make out what else she said. The people in this room are not interacted with…just watched. Mom, for example, was in a Gerry chair with the head of the chair tilted back so far that all she could see (in her view) was the ceiling. She wasn’t laying flat, supine…but she was tilted way back. This is sort of torturous being in the room like this…no privacy, loud, hard to focus…but I am thinking that maybe I can help others too as they watch me work with mom. Who knows?
I showed mom my shirt (“Don’t quit 5 minutes before the miracle happens”) and asked her what it said. While she didn’t mouth anything, it did appear that she read my shirt because her eyes moved left to right, and line to line. I began to work with mom first by working on her fingers and hands. I am thinking that focusing with her eyes, and purposefully moving her fingers and hands are important places to start my work with mom….along with language of course. But I lace language learning in all we do together. I took mom’s right hand in mine but I put my left hand fist inside her curled right hand fist and then with my free right hand I modeled my command visually while using a full manual prompt to get mom to follow the command with her right hand. The first command was simply, “OPEN” and I said this and showed her this with my free right hand, while opening her own right hand with my left hand. We practiced this over and over. I want her to make the mind-hand connection again. Mom’s hands began to close and get tight as I first did this exercise, and though her hand was closing and not opening, I was happily aware that she was indeed connecting her thoughts to her hands because of the evidence of her closing her hands. Eventually mom began to loosen her hands over mine and this made it easier to manipulate her hands. We practiced this for 30 minutes, then I did mom’s full physical therapy/range of motion exercises. At one point, mom wasn’t looking at me so I started to touch my finger to her nose so that I could touch my nose then hers and repeat until I got her to focus---but the first time I went to touch her nose, she flinched away!! This is a good thing---something she didn’t do just 4 days ago. The head of respiratory and the pulmonologist came to see mom in the dining room. The pulmonologist asked mom to shake his hand, stick out her finger, and if mom knew who he was…mom stared at him and gave good eye contact, but could not complete any of his commands. He then laughed and said that mom was a “bad boy” now and had to be in the “bad boy room” and that he guessed she’d never “do that” again. Hard to hear. Mom and I did the IPAD next…ACTIONS, EAT, VEGETABLES, WEAR (these programs all show the item, name it, and spell it). I then played some music for mom (Steve Tyrell’s “Standard Time”) and Mozart Piano Concertos. I did mom’s full physical therapy again around 2:00. I tried to have mom work with the sensory balls (the ones that you squeeze) but mom just held them. She only squeezed them with a full manual, hand over hand prompt. Mom was moved back into her room at 3 p.m. and promptly fell asleep. She mouthed something to me a few times…mainly in reference to the music she was listening to.
Claudia and Lenny joined me with mom around 3:30. Mom woke for a little while when she was moved to the bed from the chair. She kissed Lenny when he asked for one. The evening CNA found a discoloration (sort of like the beginning of a bruise) just above her right ankle area. It is not a bed sore because it is not on a pressure point. The CNA called the nurse and the nurse called in the physician’s assistant. He told them how to care for the area. As mom slept, we sat with her and talked to her and rubbed her arm and placed the therapy balls under her hands to keep them stretched. I gave her a manicure and pedicure (my new trade!! Hahaha!) and she mouthed, “OW” and “Stop that!” and “Leave me alone!” (maybe this isn’t my new profession).
The attention of the staff continues to remain constant since the incident—people running to alarms and bells…patients being monitored more closely…curtain in mom’s room drawn at all times… Claudia and I got weepy around 5:30 and one of the nicest nurses came in to do care and found us crying…he asked if he should leave and we said, “No, you’re family.” We told him we were crying out of frustration of how things are now with mom compared to before and he apologized again (even though he wasn’t here that day of the incident). He gave us a pep talk and said that he is a new nurse and he has never seen another family like ours. So full of love and compassion and hope. He reminded us to read the wall and my shirt and not to “give up 5 minutes before the miracle happens.” Not that we would…but it was good to hear. So…we did her physical therapy again around 6:00 p.m.
We are still collecting all the records from both the facility and the hospital so that we can assess what happened to mom that day in December and also where she is at now. We are hoping with all the information we can provide her with the best care and develop the best plan. So far, in every direction we have turned (both medically and legally), we are getting the same information: it appears that mom was not without oxygen (based on her awake state, temporary alertless, ability to sometimes focus…) and that it appears that she is on her way back to where she was before all this happened. This is good news certainly. Claudia remembered tonight that a nurse from the hospital asked her why mom is on a feeding tube when mom can obviously swallow. She also asked if mom was ever given a swallow test. She hasn't been given one and Claudia told the nurse she didn't know why mom is still on a feeding tube. We will have to look into this.
Claudia, Mom and I watched “The Monkees” on DVD tonight! It was fun!! We tucked mom in and prayed over her and left for the night.
“Be completely humble and gentle; be patient, bearing with one another in love.” Ephesians 4:2
When I arrived to see mom today, I was told she was in the “dining room.” This is the room where many of the recreational activities take place—however, today there were no activities in this room. Mom was placed there along with 2 other patients because she and they are considered to be “high risk” patients who need continual monitoring (as per her CNA). I was told that mom will be moved to this room every day until around 2-4 p.m. because there will be an assigned CNA in that room watching and monitoring these patients. Being in one room makes it easier to monitor them. Mom is allowed to be in this room without the mitts on her hands…she allowed to move freely. This is the idea behind her being in this room. I am allowed to move mom back to her room while I visit (but I didn’t request that because it is complicated to move a person and her vent along with her. I was also told that, if a family member is with the person, then the person is left in the dining room and no CNA is needed. Mom is very alert right now. She is staring at me and watching what I am doing and I think she even said my name, “Kathy…” and something else but I couldn’t make out what else she said. The people in this room are not interacted with…just watched. Mom, for example, was in a Gerry chair with the head of the chair tilted back so far that all she could see (in her view) was the ceiling. She wasn’t laying flat, supine…but she was tilted way back. This is sort of torturous being in the room like this…no privacy, loud, hard to focus…but I am thinking that maybe I can help others too as they watch me work with mom. Who knows?
I showed mom my shirt (“Don’t quit 5 minutes before the miracle happens”) and asked her what it said. While she didn’t mouth anything, it did appear that she read my shirt because her eyes moved left to right, and line to line. I began to work with mom first by working on her fingers and hands. I am thinking that focusing with her eyes, and purposefully moving her fingers and hands are important places to start my work with mom….along with language of course. But I lace language learning in all we do together. I took mom’s right hand in mine but I put my left hand fist inside her curled right hand fist and then with my free right hand I modeled my command visually while using a full manual prompt to get mom to follow the command with her right hand. The first command was simply, “OPEN” and I said this and showed her this with my free right hand, while opening her own right hand with my left hand. We practiced this over and over. I want her to make the mind-hand connection again. Mom’s hands began to close and get tight as I first did this exercise, and though her hand was closing and not opening, I was happily aware that she was indeed connecting her thoughts to her hands because of the evidence of her closing her hands. Eventually mom began to loosen her hands over mine and this made it easier to manipulate her hands. We practiced this for 30 minutes, then I did mom’s full physical therapy/range of motion exercises. At one point, mom wasn’t looking at me so I started to touch my finger to her nose so that I could touch my nose then hers and repeat until I got her to focus---but the first time I went to touch her nose, she flinched away!! This is a good thing---something she didn’t do just 4 days ago. The head of respiratory and the pulmonologist came to see mom in the dining room. The pulmonologist asked mom to shake his hand, stick out her finger, and if mom knew who he was…mom stared at him and gave good eye contact, but could not complete any of his commands. He then laughed and said that mom was a “bad boy” now and had to be in the “bad boy room” and that he guessed she’d never “do that” again. Hard to hear. Mom and I did the IPAD next…ACTIONS, EAT, VEGETABLES, WEAR (these programs all show the item, name it, and spell it). I then played some music for mom (Steve Tyrell’s “Standard Time”) and Mozart Piano Concertos. I did mom’s full physical therapy again around 2:00. I tried to have mom work with the sensory balls (the ones that you squeeze) but mom just held them. She only squeezed them with a full manual, hand over hand prompt. Mom was moved back into her room at 3 p.m. and promptly fell asleep. She mouthed something to me a few times…mainly in reference to the music she was listening to.
Claudia and Lenny joined me with mom around 3:30. Mom woke for a little while when she was moved to the bed from the chair. She kissed Lenny when he asked for one. The evening CNA found a discoloration (sort of like the beginning of a bruise) just above her right ankle area. It is not a bed sore because it is not on a pressure point. The CNA called the nurse and the nurse called in the physician’s assistant. He told them how to care for the area. As mom slept, we sat with her and talked to her and rubbed her arm and placed the therapy balls under her hands to keep them stretched. I gave her a manicure and pedicure (my new trade!! Hahaha!) and she mouthed, “OW” and “Stop that!” and “Leave me alone!” (maybe this isn’t my new profession).
The attention of the staff continues to remain constant since the incident—people running to alarms and bells…patients being monitored more closely…curtain in mom’s room drawn at all times… Claudia and I got weepy around 5:30 and one of the nicest nurses came in to do care and found us crying…he asked if he should leave and we said, “No, you’re family.” We told him we were crying out of frustration of how things are now with mom compared to before and he apologized again (even though he wasn’t here that day of the incident). He gave us a pep talk and said that he is a new nurse and he has never seen another family like ours. So full of love and compassion and hope. He reminded us to read the wall and my shirt and not to “give up 5 minutes before the miracle happens.” Not that we would…but it was good to hear. So…we did her physical therapy again around 6:00 p.m.
We are still collecting all the records from both the facility and the hospital so that we can assess what happened to mom that day in December and also where she is at now. We are hoping with all the information we can provide her with the best care and develop the best plan. So far, in every direction we have turned (both medically and legally), we are getting the same information: it appears that mom was not without oxygen (based on her awake state, temporary alertless, ability to sometimes focus…) and that it appears that she is on her way back to where she was before all this happened. This is good news certainly. Claudia remembered tonight that a nurse from the hospital asked her why mom is on a feeding tube when mom can obviously swallow. She also asked if mom was ever given a swallow test. She hasn't been given one and Claudia told the nurse she didn't know why mom is still on a feeding tube. We will have to look into this.
Claudia, Mom and I watched “The Monkees” on DVD tonight! It was fun!! We tucked mom in and prayed over her and left for the night.
“Be completely humble and gentle; be patient, bearing with one another in love.” Ephesians 4:2
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