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.
No comments:
Post a Comment