Claudia started the day with mom. It is CLOWN DAY today at the facility for April Fool's Day so Claudia brought all her clown stuff. She juggled through the halls, for mom, for the nurses and for anyone else who would watch her!!!! She brought her disappearing scarf and made her scarf disappear for everyone. Claudia also brought huge clown feet to put on mom!!!! Clown shoes!!! Mom rolled her eyes and smirked when Claudia put them on her!!! As if to say, "You are crazy!" Mom ate a great big breakfast with hand over hand prompting and putting the food on the fork at times for her. The CNA and Claudia helped her jab the food and mom would turn the fork and they'd help her get the fork to her mouth or to lift the fork and then mom would finish moving the fork to her mouth. She had pancakes and coffee and juice and oatmeal with vanilla milk. They really had to work to keep her awake. She was very tired. The head of respiratory came to see mom and told Claudia, that as a result of our prompting and questioning about mom and her breathing, they did an observation of her last night. There was a respiratory therapist (the head therapist's right hand person, second in command) who knows mom and did an overnight shift at the facility, so this person came in periodically on and off to observe mom and monitor what happens with her overnight. (My question or comment is: Mom has been here 10 MONTHS...they only did this NOW???!!!!). It was determined that mom has something called "periodic breathing" where she tenses and her hands clench and she winces and she has difficulty breathing on and off and she has periods of apnea for periods of up to about 10 seconds. Claudia asked if this is something to worry about in reference to whether mom will ever recover from this or not. He said it is typical and consistent with and of a traumatic brain injury and that mom can recover from this as the brain restores itself--it could definitely dissipate over time and now they know what they are looking at---?????? NOW they know???? What's been going on the entire time mom has been there????!!! Claudia asked if it is possible for them to put the vent on different settings for day and night and he said most definitely. Claudia asked if they could take her on and off the vent during day and night. The head respiratory therapist said that they would adjust the settings at first. Then they would keep her on the vent at night and off during the day. Basically, this sounds like the original weaning plan. Gradually lessening the settings during the day and more at night at first and then over time the condition goes away and mom is off the vent. The pulmonologist is coming today and he will talk to this person about it. Claudia asked again if this condition could go away and the therapist said that it could and that this is what we are hoping for --- that the neuroplasticity of the brain will compensate for the problem by opening other pathways.
When I got to mom today, she was being moved to the chair from the bed. As soon as she was moved to the chair, the Occupational therapist came to feed mom lunch. For lunch today, mom had grilled bratwurst (look like sliced hot dogs to me but what do I know?), sauerkraut, a soft roll with butter, carrots and boiled red potatoes. She also had juice and coffee too. Mom would NOT eat. The OT was so kind and worked well with mom but mom wouldn’t eat for anything. The OT had to continually prompt mom physically…sometimes even putting the food on the fork and then moving it to her mouth (the plate to mouth movement is something mom could do really well already). The piercing and stabbing with the fork is her newest goal and mom didn’t do it at all for the OT. She began to fall asleep too. The OT said that mom does better eating when Anthony is here with her. The OT left, and I finished coaxing mom to eat more. But first, I prayed over mom and anointed her with frankincense. For me, she did take 10 forkfuls of food from the plate to her mouth and she also scooped or pierced the food when she did it. It took her almost 2 hours to finish lunch. She did, however, quickly and independently eat all the cake with icing on it for dessert!!!! A gal after our own hearts!! Two different CNAs sat with me while I monitored mom eating lunch. Both were great people. Mom kept falling asleep in between mouthfuls of food or drink. Then, she’d wake up and finish chewing or swallowing like she had never stopped to nap!! It’s funny how we are!! She even was sleep-eating a few times!! Fork to mouth from plate as she slept. Sometimes she even fell asleep as she sucked through the straw. It takes so much effort to do things when you are weak. We take so much for granted. After mom woke up a bit and finished eating, I took out the large, oversized, plastic tweezers and the pom-poms and container. I did hand over hand prompting with mom to get her to pick up pom=poms with the tweezers in the right hand and place the pom-poms on top of the container. Then push the pom-pom through the hole in the top of the container with her left hand. We did this continual pattern for 40 pom-poms and then mom managed to pick up and place 6 pom-poms alone. I persisted in completing the activity repetitively and relatively smoothly and steadily so that I could establish a pattern and perhaps make an imprint on mom’s brain regarding the activity. I kept up the motion in order to hopefully create memory. She then fell asleep again. Her nose was really running a lot today. I spent a lot of time trying to get her to drink her liquids. She needs to drink a lot now that she doesn’t get tube fed. If she doesn’t drink enough, it isn’t get for regeneration of cells and cell development. At one point, when she woke up, I tried to use some modeling clay to strengthen her hands…but she fell asleep again. When she woke next, I tried to do the peg board with her. But, mom fell asleep. She would open her eyes and then go right back out again. I am thinking that we need to bring in either real forks (but that might confuse her) or something that can pierce something else and work on having her pierce things in order to practice piercing with a fork. Mom did a lot of trembling today too. Her arms and hands trembled a lot each time she woke up. The pulmonologist and the head respiratory therapist came in to see mom this afternoon. Mom was sound asleep when they arrived but she woke up and kept her eyes squinted shut and trembled. They both saw that and the head of respiratory said that’s what she did at night too and then that was followed by a period of apnea up to 10 seconds or less. He said he didn’t know what the shaking was about. He said she was very awake and spoke to him during her breakfast this morning. He said she told him that her breakfast was good and that she was enjoying it. It seemed like a contest between the 2 of them to see who she would talk to more!! Hahaha!!! The head of respiratory said, “Where are her clown shoes? Boy, your sister is something else, isn’t she?” HAHAHA –that’s an understatement with respect to Claudia!! Mom slightly shook her head in response to the pulmonologist’s questions and she read his badge but she fell asleep as soon as they left. Mom’s evening CNA came in to say hello and said that mom has been up at 10 or 11 p.m. this week and that they talk and the CNA tells mom all about her pregnancy and the baby she is expecting and they sing. One song they sing is “I am a Promise.” The speech therapist stopped in to work with mom late in the afternoon but mom was asleep. The speech therapist said that mom has been out of it mainly for the last 1 ½ weeks now. The therapist said mom would be given 1 ½ more weeks of speech and then speech will be discontinued again.
Dad and Aunt Sophie came next and I left shortly after they arrived. Mom mouthed a lot to dad when she was awake. Dad put on the clown hair wig that Claudia brought in today. Mom smiled at him. She woke and slept and woke and slept until she ate dinner. She had breaded cod fish and cole slaw and bean soup and potatoes for dinner. She ate most of the cole slaw and bean soup but not much else. Dad said she didn't like the food. Dad said she remained awake and alert after dinner though. I guess her days and nights are mixed up?
I am so thankful to God for mom and the miracles He is doing to and through her...but I miss her so much. This time of year was special to mom. As I walked through my house tonight, I glimpsed at a large green vase I have and thought about how beautiful it is and then I remembered that I bought it once while with our family "Antiquing Club." Mom, Dad, Aunt Carol, Nancy (our cousin) and I would go antiquing all over Long Island once a month for the last 10 years. We had such fun together. While I am thankful for the fun times we now have with mom too, I, as Ava-Dolly once said at age 5, "sure do miss the good old days."
Sammy, Emily, Con, and Anthony Michael came to visit mom tonight. Mom was alert and smiling when she saw them all. They watched TV and talked and Sammy drew pictures for mom. Then, Sammy asked mom, “Who’s this Nonny? What’s her name?” (pointing to Emily) and mom said, “Emily.” Then Samantha asked mom, “What’s my name?” and mom said, “Samantha.” Then Sammy asked mom where mom was from and where she grew up and mom said, “Brooklyn.” Then Sammy wrote the word BROOKLYN on the white board and mom read “Brooklyn.” They tucked her in and said prayers and they left her happily watching the METS game.
"let us go right into the presence of God with sincere hearts fully trusting him...Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise. Let us think of ways to motivate one another to acts of love and good works. And let us not neglect our meeting together, as some people do, but encourage one another, especially now that the day of his return is drawing near." Hebrews 10:22-25
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