Mom and I spent part of the day together today. Then dad joined us. She slept for most of it though! I don’t remember if I mentioned it before or not, but we gave about 25 staff members a “Don’t quit 5 minutes before the miracle happens” T-shirt as a holiday gift, along with an adaptation of the reflection I included in the blog. Mom is blessing so many people around her, and that still astounds me now. What is a heartache to our family, is a blessing to so many other people. After receiving her T-shirt and reading her reflection, one of the CNAs said that she knew it was time to go back to “God’s house” and this was just the sign she needed to do it. A nurse came to Claudia crying over how much she was touched by the reflection, and we have heard from many others as well. Many have also commented that watching our family interact with each other and mom has changed their perspective on love, and family and life. And I suppose that in some way, we now have mom’s undivided attention—though it isn’t in the way we want her to be of course---she is still for once (she was always a busy lady who multi-tasked all the time). It is a blessing that she is calm, and peaceful too, and not in pain in any way. But I think it’s safe to say that we all miss talking to her. Mom was ever present in our lives. She is the touchstone to many of us. Always available at any hour of the day or night.
Dad and I are watching mom as she sleeps; she is funny to watch. At times, she yawns a huge yawn and smiles but her eyes are closed. Other times, dad wiggles her foot and calls to her to wake up and mom, with eyes closed, mouths, “Stop it” to dad! We finally managed to wake her after a lot of prompting. I had to open her eyes for her and then she looked at us and smiled. She smiles a lot at dad. He sits and talks to her and she watches him and listens and smiles. At one point, she mouthed, “You are too funny” to dad. She was very sleepy for our visit but did mouth things. When the respiratory therapist came in to check on mom and her charts, mom looked at dad and asked/mouthed, “How is it?” and we both reassured her that all was fine. He mentioned that it didn’t look like mom was breathing much above the vent (I questioned him about her progress) but he said that this could just be her individual pattern because he noted that she does begin each breath on her own but then the vent completes it. I gave mom a manicure and she hated it! She doesn’t like to get her nails cut OR filed…she makes scrunched up faces and says, “Ow” a lot. Her reaction to it reminds me of Lenny when he was young!!
The speech therapist came in to check mom’s trach area for any signs of the blue dye that was put in the 1 cup of pudding mom ate today!!! The speech therapist said that she is confident in thinking that mom can handle pureed food well at this point. She is starting with liquids tomorrow. She said that she works from thick liquid to thinner liquid to the thinnest liquid. She either said she was going to try honey tomorrow or something of that consistency (but I think she said she was going to try honey). The speech therapist said that SHE is the only one who can approve the barium swallow test---I told her mom was scheduled for one already and she said that one went on hold until she approved it. She is approving it now that she did a preliminary swallow test with pureed food with mom. Mom’s neurologist ordered the barium swallow test, and the visit to the ENT… yet the people at the facility approve or disprove what gets done. It’s sort of scary in ways, because it’s like we, her family, have no say in what tests she does and doesn’t get…it’s like the facility is in charge of her now. I can’t say I like this. The speech therapist said that it will take time, like several weeks maybe, to have the barium swallow test done, but in the meantime, she said she’d continue to introduce more and more foods and textures to mom and monitor her. She said that it is tricky business because it is difficult to tell if a person aspirates or not (by eye and by temperature). She looks for signs of the blue dye in the trach, mouth…areas and also checks mom’s temperature in order to determine whether or not mom is aspirating or swallowing fully. So far, as I said before, mom seems to be doing OK. The speech therapist is ordering a modified barium swallow test. She said that she could also order a chest x-ray to check for aspirations but that, for now, since they both do the same thing, she will only order the modified barium swallow test. She said she’d keep us posted in the meantime. She said she didn’t want to order any tests at the hospital until she could tell if mom was even able to tolerate swallowing at all. She said that mom didn’t open her mouth enough on the first day but yesterday and today she opened widely. The therapist also said that, just because she is doing well now, that doesn’t mean that in a week or so, she may not do so well---her temperature may rise or she could show signs of food in the wrong places (not in her stomach or digestive tract).
After dad left, I gave mom a black magic marker and the white board and I drew a red circle and asked her to draw one too. I had to physically put the marker in her hand, but she maneuvered it into a pincer grasp by herself! Then, for the first time in a month, mom made some marks with the marker on the white board!!!! Nothing big or legible, but nonetheless, she made purposeful marks on the board!!!! She watched her hand the whole time too!!! After this, I let mom watch some of the “Electric Company” on the IPAD with the headphones for a while. Mom really, really loves this show!! It is a very sophisticated, educational children’s show. Then I left to go cook Lenny a late dinner. Since it will likely be icy later, I don’t intend to come back tonight. Mom goes for an EEG tomorrow at the neurologist’s office at 11:00. I pray all goes well, please pray too. Thanks. Mom kissed me good-bye when I left she and I prayed before I left.
“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks the door will be opened.”
Matthew 7:7-8
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