Today is the day mom gets decanulated (the trach comes out)!!!! I can’t wait!!! In honor of her big day, Claudia, Ava, Jean, and Lenny all wore their “Don’t quit 5 minutes before the miracle happens” royal blue T-shirts to work!!
I began the morning with mom today. I arrived bright and early but she was out like a light, snoring loudly and asleep. I let her rest. At this point in her recovery, she needs to sleep and rest as needed (though not in a way that confuses daytime and nighttime); it’s a balancing act at times. I was, however, surprised that her TV was on, and quite loud. There was also a chair next to her bed near the wall---it looked like someone may have been sitting vigil with her during the night. I wonder what kind of night mom had. I am hoping she slept and rested adequately. We need to find out the results of the urinalysis today too---hopefully the results are in today. And—hopefully, a UTI (urinary tract infection) is the cause of mom’s disorientation over the last 3 days. It would be an easy fix. One of our favorite respiratory therapists just passed by mom’s room. The therapist commented that today is Mom’s BIG DAY and wished to be here when it happened! Everyone wants to be part of the big moment. Everyone knows today is mom’s big day…all the nurses, aides, respiratory therapists that mom has had over the last 13 ½ months are buzzing by her door and yelling in a good word about this milestone in mom’s recovery.
The respiratory therapist came in and said mom should have her shower first and then be decanulated. Mom is in the shower now. I can’t believe it’s been 13 ½ months already. When mom woke today (actually her CNA woke her for her shower), mom was confused a bit. She called to me right away but she insisted she had a shower already and then said that she didn’t need another one. Mom still has the catheter in since Saturday evening when they took a urine sample. I think it comes out today but I’m not sure. Mom hardly coughs anymore, which is great! Thank God. Lately, mom has been complaining that the toes on her right foot hurt to the touch. You could just be gently massaging them or rubbing them and she screeches in pain.
WELL---AT 9:00 a.m. THIS MORNING---THE TRACH CAME OUT!!!! PTL!!!!!! It was the fastest procedure ever! I could have done it---there was only a 6 inch tube in mom’s throat—that was it. No balloon at the end. It took about 3 seconds or less to remove. Mom has 2 large bandages over the area now until the stoma (hole in her neck) closes. It can take anywhere from 1-8 days to close (or more). It all depends on the person.
The Occupational Therapist came in to work with mom today. The therapist evaluated her today. Mom was asked if it is sunny outside or not, to raise her left and right arms…mom did better with the right side of course. Mom was able to answer all the questions the therapist asked. The therapist said mom has quickly progressed from following 1 step directions to following 2-3 step directions. Mom asked what she would do in therapy and what she had to do to go home. The Occupational Therapist said that mom will get ½ hour of occupational therapy a day starting tomorrow. At Occupational Therapy, mom will work on self-help skills like dressing…and also on cognitive abilities like answering questions and following commands. The therapist wants mom to wear the split on her left hand whenever we aren’t working on it to prevent curling.
Mom and I worked on the nuts and bolts once she woke up. She needed me to show her how to screw them together through a model---I did the task with a nut and bolt at the same time that mom did it. It took mom a great deal of thought and planning, but she did screw the nut on the bolt---several times with several different nuts and bolts. The nuts and bolts are different colors and the end of the bolt matches the same shape as the nut. For now, I gave mom the matching pairs—later on we will have her make the match and screw them together.
Carmine came today. He had mom slightly stick out her tongue and then swallow while she did this. This exercises the bones in the throat--- 10 exercises like this 3 times a day. Chin tuck exercise is the other exercise—take your chin and tuck it into your neck—head down and then eat, this helps the food to go down the correct tunnel in the throat—not down airway. We will work on trying to keep the throat up on the swallow. Carmine used the vibrator on mom’s cheeks, tongue, and lips today. This will help mom in chewing because it will strengthen these areas. Carmine teased mom and said that he made sure he had a breath mint today and mom made believe she passed out! They joke and tease each other. Carmine worked on mom’s lips and mouth, and tongue manually (with his hands) next. After this, Carmine used a little sponge on a lollipop stick to rub the sides of mom’s tongue.
Dad came to see mom next followed by Anthony, Sammy, and Gina and Mom’s friends, Maureen and Florence. They all talked and laughed a bit and enjoyed visiting. Anthony said that the person at the facility who plays the organ from room to room came to see mom. Mom appeared to enjoy the music and sang along but her roommate had the TV on really loud and it pretty much drowned out the organ. Anthony brought some photo albums from home to look at with mom and she enjoyed looking at the pictures with them. Anthony said that mom appeared to be very frustrated because she can’t make too much noise when she talks again due to the stoma still being open in her neck for now (though the nurse did show her how to cover it with her hand and talk—AND mom was able to make sound without covering it). I wonder how much of her low talking and silence is intentional (doesn’t like how she sounds) and how much is cognitively (forgets how to project) or physically (hole in throat) impaired or delayed on a temporary basis. Time will tell. Mom went to physical therapy and they did indeed increase the weight on her ankles to 4 lbs and mom was able to do leg lifts. She attempted to stand at the walker but couldn’t. We need to practice this skill with mom ourselves I think.
Tonight, Claudia stayed with mom until she fell asleep. Dad said that mom disconnected her feeding tube and the liquid got all over her. She still gets anxious at night and begins to do silly things she is not aware of doing. As of now, I haven’t heard from Claudia which leads me to believe that she is still with mom. Mom’s roommate has a mental impairment and doesn’t have any respect for quiet or lights or anything day or night. The TV blasts and the lights are off during the day and on full blast at night. Mom leaves that room in a day or two so I guess we will just ride it out with her for now. We have asked both the roommate and her husband and the nurses to turn things down…sometimes there is compliance and sometimes there isn’t. Just heard from Claudia now and she said that after a bit of anxiety, mom calmed down and was peaceful. She didn’t remember all that went on today but she did remember some things. Mom said, “I’m such a bother. I am making trouble for people now.” Claudia had on her “Don’t quit…” T-shirt and told mom how happy we all are---Claudia started to cry and mom asked why. Mom asked what she did---and Claudia said, “You are a miracle. You opened your heart to receive our love and we loved you back. You are a miracle.” It ended up being a nice visit. Claudia could actually hear mom’s voice. They talked and laughed and snuggled. Claudia asked mom if she wanted her piggies and mom said, “Wait, wait, wait…I have to decide which one.”
Mom goes to the hospital next week for a cerebral angiogram of the coil that was put in last year to make sure all is still well at the site. It is a one day procedure. A long day, but one day. Please continue to pray that mom finds the peace she needs to settle down at night and rest. She needs it---also she is still experiencing bowel difficulties as well. Both the doctor and the disease control person came to check mom and said they found nothing wrong. Still waiting for the results of the urinalysis.
“This is the resting place, let the weary rest" Isaiah 28:12
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