This morning, dad began the day with mom. He arrived early and said that mom was out like a light again and could not be woken up for anything – no matter what they tried. She didn’t eat breakfast because she was so deeply asleep. However---she woke up finally!!! When I arrived, she was hugging dad, reaching for him and staring into his eyes. She was very awake. Not very talkative, but talking when asked a question. She kept hugging dad and throwing him kisses. She also was moving her left hand and arm like crazy!! Moving it up and down like we do when we do therapy. Dad told them not to feed her lunch or give her a shower until she returns from the neurologist appointment. Mom also was squeezing her leg muscles above her knee and she was also moving her feet – both on command.
On the other side, the head of respiratory moved her PSV from 10 back to 12 again on the vent. Wrong direction. He said her Tidal Volume was too low. Dad asked him if that could have caused the sleepiness but the head respiratory therapist said no. She has had almost no secretions (very little) since yesterday and this is good.
The urine test and the x-ray and 3 blood tests were done and no results yet this morning. The list of drugs she is taking are Potassium 10 mg. daily, Lasix 40 mg. daily, Labetalol HCL 100 mg. every 12 hours. One of the bills dad received for mom said something about surgery. When dad inquired about it, he found out that they were charged for the podiatrist to cut her toe nails---that was the “surgery!!”
Anthony came in and mom said hi and he talked to mom about fishing (his favorite pastime!!). He even brought a fishing magazine to read to her and show her pictures in. Anthony was trying to get mom to catch and throw the large 10 inch ball. She caught it between her arms 2 times. And she also rolled the ball to him twice. Mom kept grabbing mom’s shirt a lot too—she didn’t like the rips on the collar!! She also touched his shirt collar and made a face and dad said, “You don’t like how I ironed it?” and mom said, “No.” At one point with the ball, mom lifted the ball to throw it to Anthony!!! She didn’t let go but she moved her arm like she was throwing!!
Before mom left for her doctor's appointment, Anthony and I kept briefing her about talking to the doctor when he speaks to her and how important that is. I also read the Social Story that Claudia made for mom called, "Getting Better" which lays out all the conditions and terms of getting better ("I need to answer the questions the doctor asks me" and "If I want to get better, I need to do what people ask me to do"...). Today I asked mom how old she was but she didn't know so I told her. Then I asked her when her birthday was and she didn't know so I said, "August.......?????" She mouthed, "7th" --- it is the 13th. But she said a number!!
Mom fell asleep on the guerney on the way to the ambulance that took her to the neurologist's office. It didn't look promising. Dad walked alongside her shaking her awake and begging her to remain alert until after the appointment. When she got outside just before they lifted her into the ambulance, she woke up so I said, "OK mom I'll see you there!" and she said, "Oh. Where am I going?" So I told her. When we arrived at the office, mom was awake. PTL!! MOM WAS STELLAR AT HER VISIT WITH THE NEUROLOGIST!!!!! She did great!!!! He kept saying, "Amazing, just amazing!" and "She is a miracle" and "She is doing great---I saw her last in January when she was in the hospital. This is miraculous!" We so needed to hear this. So much. The neurologist began by asking about mom and her progress---all directed to me. The nurse from the facility who came with us didn't know anything about mom's recent infection, what medication she was on, or what mom was and wasn't capable of doing. I couldn't help but thank God that we were there with mom or this nurse would have painted a bleak picture of mom's progress, if any progress would have been mentioned at all. When the neurologist asked if mom was talking at all, I said, "Oh yes she does" just as the nurse was making a face and saying, "No she doesn't." Unbelievable! The doctor said, "So does she or doesn't she talk?" I said she did speak but not audibly due to the trach. When I told him she was doing crossword puzzles with us---he was amazed again and said so. I told him on a good day she is 50/50 with the clues I give, on a not so good day maybe 20%. He couldn't believe it. He also thought it is miraculous (these are the words he used) that mom is on a mechanical soft diet and eating and attempting to feed herself too. He couldn't get over her progress!! He asked about what therapy mom gets and I said "nothing" and he said, "Other than what you do?" and I said yes. But the nurse said, "She gets OT and Speech" to which I said, "Yes she received a few weeks of speech exclusively in relation to swallowing and feeding, but speech has been suspended again. She received 2 weeks of OT to help her learn to feed herself but that is suspended too now. He asked if they did the sleep apnea study he recommended and I told him no. He said, "Well, I can understand their concern. It IS an overnight procedure. Perhaps next time she comes I will recommend it." We told him about how tired mom has been these last 5 days and out of it and unable to be roused and he said it is definitely from the antibiotic she had been on and the infection she just recovered from. He said not to worry because we all feel lousy and weak and tired with an infection and for mom it is traumatic and exaggerated. He then turned his attention to mom and said, "Hello Dorothy! Hello. Hi there Dorothy." and mom mouthed, "Hello." He was tickled pink! He said, "How are you today Dorothy?" and mom mouthed, "I'm fine thank you." and he was so excited, "She's talking to me!!!!" he said as he turned to me. "Dorothy, I want you to take your left hand and touch your right ear" I thought...oh no, how depressing...her left side is her weak side and that's also a complex command. Mom did nothing. He asked again and again mom did nothing. Then he quickly said, "That's OK. Close your eyes for me." "Can you close your eyes for me?" Mom did it---closed and opened. He asked again and mom did it again. "Good, very good. Now raise your right hand" mom began to do it and he said, "Good I see you can do that too. Very good." As he turned to make note of this, he then turned back and we both saw mom slowly lift her left hand and arm and cross her body and touch her right ear!!!!!!!!!!!!!!!!!!!! I wanted to cry and the neurologist shouted, "Oh my!!! She's doing it!!! She touched her ear with her left hand!!" He again noted how amazing this was. How far mom has come. He asked her what month it was and then even gave her choices but she didn't know. He then asked her to do something else and she repeated what he said and I said, "Yes, that's right mom. Do it, don't say it. Do it." I knew I shouldn't distract her but I did...she turned to look at me then and wouldn't look back at him. He said, "Oh that's OK. Do you know her?" Mom mouthed, "Yes." He said, "Good, who is she?" Mom gave a contemplative look and mouthed, "Ummm....my...my mother?" (some of my friends said that's true!!! hahaha!!!). I said, "No mom. You are my mother. I am your daughter." Another of my friends said that mom may have been trying to say that she is my mother---"I am her mother." He touched her feet and asked her to lift each leg separately. Mom couldn't do that but she did move each foot. He was amazed again. He also took a metal instrument and ran it under the sole of mom's foot and then poked her with it to cause pain and asked her if she felt it, mom made and face and mouthed, "Ow, yes I do." I told him mom has a delayed processing time and that in September after she woke from the 3 month coma, we saw her have more restoration in her physical/motor abilities and less in her cognitive and linguistic abilities, however, since the episode in December, Mom has restored more of her linguistic and cognitive skills rather than her physical ones this time. He said that was OK because with cognition we can get her to follow commands and then we can order therapy for her. He said perhaps that will happen in late June when she comes again to see him. He also asked mom to lift her left arm, she didn't so he lifted it and said, "Hold it up there" she couldn't, but she did it with her right arm and he was impressed. He said that it is very, very important for us to keep mom engaged through conversation and crossword puzzles (he loved that!), her physical therapy too and to "continually keep her engaged, do not back off, keep working her." His last words to us were, "She is a miracle. Just amazing. I want to tell you that you should have every hope that she will recover well and continue to progress."
Dad and I went back to the facility with mom and she was changed and ate lunch but fell asleep for 1 1/2 hours or so. She woke up alert and ate dinner and talked with dad and held hands. Dad asked the nurse to put her mitts on her hands at one point so he could run to the bathroom and he told mom he'd be right back. Mom said, "No you won't." and the nurse heard it too and was amazed!! Dad came back and mom laughed. He tucked her in tonight.
"He fills my life with good things." Psalm 103:5
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