Sorry this entry is so long but it is full of discussions with every therapist, dietician, and building administrator. It is full of information.
Claudia began the day with mom this morning. Mom was sleeping at first so Claudia let her sleep a while after the events of yesterday. The nurse said that mom’s sputum is yellow so she was going to order an xray. Claudia did mom’s full physical therapy/range of motion exercise. She put the 10 inch ball under mom’s legs and asked her to lift them, but mom could not lift either leg. She tried to work with the theraband and mom did 2 on the right leg/foot and 2 slightly on the left leg/foot. Claudia also did the orange, scrunchy tube with mom---trying to get her to pull with a prompt.
When I came, mom was being dressed, washed and changed so I met with the Building Administrator. He saw me and I smiled and said, “Hello, how are you?” He replied, “Hi! You’re smiling!” I said, “Well, yes but I need to speak with you.” I told him about the events of yesterday, mom’s G-tube coming out, the snotty, attitudinal respiratory person, the lack of the respiratory person’s team efforts in transporting mom from one room to another, how they are STILL calling dad and not me in emergency (or other) situations, how mom was taken to a hospital far from here… He listened. He agreed with every viewpoint I had and offered. He said he’d talk to the respiratory people. Whatever. It may not change things but at least he knows and is aware. I had told him that I was not there to “tip-toe” around the staff when my mom was in a crisis. I told him that, if this was another person who was treated this way, the respiratory therapist’s attitude would have escalated the situation to a place of destruction and possible violence. I explained that the team should act and behave like a team…not like islands. And that all of this should be done on behalf of the patients/residents. I told him that upset family members should be treated with respect and compassion. I told him that I was brought up to believe that, as a person in a position of service, the families should always be cared for and treated kindly and with compassion and respect. I told him that I come from a family of creators and teachers and that we continually seek to make the world a better place to live in; especially where mom is concerned, but not exclusively to just her.
I met with the head respiratory therapist next who told me that mom’s PSV (Pressure Support Volume—which controls the person’s ability to, not only initiate breaths but, expel CO2 as well) was down to a 10 on Monday (we knew that) and raised back to a 12 on Wednesday because mom’s CO2 levels rose. I told him I knew her levels rose but that it wasn’t really too significantly---from a 41-42 to a 44-45 (I noted the levels to him). He said he didn’t want to “fool around” with CO2 levels. I told him I respect that (politically correct answer). He said that, on Monday, he was going to leave the PSV on 12 and lower the Rate Volume from 8 to 6. He anticipates that mom will do well with the change. If so, then in a week, he will lower the PSV to 10 from 12. Once mom gets the PSV down to 8 and remains on a rate volume of 6, she comes off the vent again and goes into the CPAP mode of the vent. Following a week or 2 of CPAP mode, mom goes back on the trach collar (where she was in December) and the head of respiratory said that she can get a Passy-Muir valve (talking valve) at that point. I asked about the Passy-Muir 007 valve for people on a vent and he said that, due to the fact that mom is still getting pressure support PSV, she can’t get the valve. This is because her cuff in her throat that blocks off the air way channel would need to be opened to allow air in, and in mom’s case, this could be detrimental to her CO2 levels rising.
The Speech Therapist came to reassess mom today---we think it is because she saw mom tell Anthony, “Happy Birthday” yesterday. Even though we have told her mom is talking, she hasn’t paid it much heed. The speech therapist said that mom was very sleepy on and off. The therapist also felt that mom was being overstimulated by what she was doing with mom. The speech therapist asked us what we have been doing with mom. The funny thing is that, even though we are here every day, I had to sit and think for a minute. Even as I relayed all that we do with mom to her, I had to sit and think a minute. It all tends to get mixed up. Basically, here’s what we do with mom for speech, as a family:
Anthony Michael, Sammy, and Anthony and Con all come in and talk with her constantly. They tell her about their day, what’s new in their lives, what’s coming up in the future. They joke with her, ask her common conversational questions…. They also sometimes (more Anthony and Sammy) write on the white board in words and drawings. They work on her conversational speech a lot. Anthony and Con and the kids do a lot with mom but this is basically what they do for her language development. Anthony is a wonder with her physical therapy!!
Claudia does many of the IPAD language apps with mom. Oral motor (it shows a person’s mouth area and tells the person watching to do something like-“Stick out your tongue” then after the words are heard, the person’s mouth area that is shown on the IPAD demonstrates the task for imitation). There are other apps that also show fruits/nuts, vegetables, actions, objects, emotions, functions… In these apps, an item/emotion/feeling is shown and the person is asked to “Touch___”or the item is shown and labeled. For the apps where the item is shown and labeled, mom labels the item in imitation. For the apps where she has to point to something, she can’t do that yet. Claudia also works on mom’s ability to identify things through sound. She uses the “Sounds around the House” and the “Outdoor Sounds” bingo games to do this. You listened to a sound on a CD and then the CD asks you what you listened to, there are pictures coinciding with the sounds. At first, we had mom just listen to the sound while looking at the coinciding picture. Then Claudia had mom point to the picture (from an array of 2 on a tray/holder) after hearing the sound. Mom is now just listening and looking, no pointing.
I usually work on the IPAD apps that have you point to a letter of the alphabet and a coinciding picture appears. I also work on the game-like apps that have you pick a word or identify a word… I also like to do crosswords with mom now too.
The speech therapist said that she is now done working on swallowing and the oral motor skills that coincide with that function because mom is now swallowing really well with no issues around texture. She is eating full meals and all foods; just needs thickened liquids now. The speech therapist said she will be working on: Naming functional objects, following 1 step directions, identifying body parts, answering simple yes/no questions (Are you a woman? Is Jean your husband?...). The speech therapist said that she does not feel that oral motor exercises are important now that mom is swallowing well. (We will do what cousin Carmine says---not the facility’s speech therapist). The speech therapist said she will be working with mom every day for at least the next 2 weeks (before she will probably drop her services!!) from 10-11 or 11-12.
For lunch, mom ate sausage, peppers, macaroni, mixed vegetables and chocolate mousse and she ate it all!!! “Clean plate club!”
Anthony was trying to get mom to follow simple commands, so he asked her to touch her nose. He used the book that Maureen made for mom which has index cards with commands written on it. He asked and showed mom the command over and over, but mom kept touching and playing with his shirt instead…at one point, after Anthony asked, mom said, “I have to finish. You touch yours.” Anthony is starting to become quite the clinician!! He thought he should use real objects and so I gathered a pencil, a book, a cup and his watch. He held each one up to mom and asked, “What’s this?” mom would look away. So Anthony kept showing mom his watch and asking what it is—then I described it to her, “It has numbers, and it tells time…” Mom said, “Banjo” and then she got stuck on “banjo” for a while. She couldn’t name any items spontaneously but she repeated what Anthony labeled. Then, Anthony took out the white board and he and mom drew (he tried to get her to make a circle), he also wrote words for her to read. Mom had just finished lunch so she was “mushy” in her affect.
Dad came shortly after Anthony and he and I remained with mom in the afternoon. Mom slept after Anthony left. She usually takes a rather lengthy (up to an hour or so) afternoon nap. When the pulmonologist and head of respiratory came in to see mom, she was sleeping. They woke her up. They noted her vent settings and said she was doing well. They said, “Good morning” and mom mouthed, “Good morning” back to them, but was sleepy the rest of the time. After they left, a woman with a large, muppet-like puppet came in to see mom with the recreation therapist. They talked to mom and the recreation therapist woke mom up and talked and talked to mom. The puppeteer sang a song to mom with the puppet and mom mouthed the words (“I’ll be loving you always”). At one point, earlier in the afternoon, mom took her hearing aid out and handed it to me. When I put it to my ear, I found that the battery was dead! Mom’s nose was running and so I gave her a tissue and asked her to wipe it and she did. The dietician came in after the recreation people left and gave us some weekly menus from which to select food. There was also a food preference sheet too. Mom’s night CNA came in to check on her and she said that mom told her “I love you too” after the aid told mom she loved her. Dad left after only 2 hours because he has a cold and didn’t feel great. Mom slept on and off for 1 hour and 20 minutes. After mom woke, I did the oral motor exercises that Carmine told us to do. The exercises in rounds of 50 on her cheek area, upper lip area and lower lip area, in addition to the tongue exercises. The aid said last night she felt to make mom’s bed before she came back—she had been praying for mom—and when she finished making the bed, she looked up and mom was being wheeled in. The aid said that she sits beside mom’s bed at night whenever mom is awake and she talks to mom and sings to her. She said she taught mom the song, “I am a Promise” and mom learned it quickly. She said she asked mom for a copy of Jean’s movie, “Just Like Joe” because she liked what she saw of it and mom told her, “Ask my husband.” She said she talks to mom and prays with her and sings with and to her. Mom was very, very sleepy today!!!! She would be awake a few minutes and then out like a light. Up and down all afternoon. While she was awake, I did some crosswords with her. Here are the clues she was able to figure out:
“Fail to attend” “I didn’t go I m____ it” Mom said, “Miss”
“A Great Lake that starts with E. Lake Eeee….” She didn’t get it so I sang, “I’ve got a mule her name is Sal…” Mom said, “ERIE!”
Mom fell asleep again. Her CNA came in to put her to bed. The pulmonologist ordered a chest x-ray for mom for Monday!!! NO! If she needs medication, then she can’t wait until Monday. One of the nurses said she would get the x-ray by tomorrow. Hopefully, she will. The Dietician came to talk to me after mom was in bed. She said that based on the fact that we are all around to monitor mom so much, she is going to stop the liquid feeding. She said we should monitor whether mom is eating at least ½ of her food at every meal. If we feel she needs a supplement, mom will get an oral liquid. No more feeding through the tube!! YIPPEE!! The dietician said that the tube may come out in a month or 2 but usually as long as mom is on the vent, she keeps the feeding tube for emergency reasons. Less trauma. Quick emergency access. Makes sense. The speech therapist is going to teach us how to feed mom but said it is similar to feeding a baby. As I am writing this, the man came in to give mom the chest x-ray! Mom's doctor at the facility also came in to talk to dad, Ant and I today and said that the reason he sent mom to the hospital that is far away from the facility is because he is affiliated with that hospital and has more say and control over what goes on there. So, for example, he could dictate what happens to mom and when she comes back to the facility or whether she stays in the hospital or not. He said that this hospital would be used for non-emergency hospital visits. Not for tests or emergencies. He asked us to decide where we want her to go and to let him know. Mom's day CNA said that as she fed mom the other day, she asked mom if the food tasted good and mom smiled and said, "Yes. Very good." When the CNA asked mom again, mom said, "Good" in a quick sharp way. By the third time that the CNA asked mom, mom rolled her eyes at her and made a face.
Claudia spent the night with mom until the early evening. She said that the CNA fed mom dinner (not mom's CNA, another one). Mom ate chicken, rice pilaf, tomato soup, vanilla milk, coffee, and vegetables. Whenever mom was asked if she wanted more, mom responded, "No thank you" or "Yes." Claudia said she had to coach the CNA a lot regarding how much food to put on the fork/spoon because the CNA was shoveling the food in. I guess the faster the better for the CNA. Joy. Maybe we can feed her. Mom was also not sitting up right in the bed either for eating. Claudia and mom looked through a catalog and mom labeled things: boots, and flowers. They looked through the magazine and laughed and labeled things and she did lick her finger and partially turn the page but Claudia had to help her the rest of the way. Then, Claudia worked on labeling body parts by putting on a CD and showing mom pictures and mom gave a disgusted look, so Claudia said, "Fine, label these things and I will put it all away." However, mom didn't and then mom either couldn't or wouldn't label some of the items. Claudia did mom's full physical therapy/range of motion exercises on her upper body and feet but not her legs because mom fell asleep again out like a light.
"In him our hearts rejoice, for we trust in his holy name." Psalm 33:21
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