Today was a great day. I always try to see what Jenny can do or if she is able ot move on with therapies. I convinced the staff to let Jenny go without an oxygen tank for therapies since she is only on oxygen for moisture. Jenny had no problems and her saturation levels were normal for the several hours she was off the oxygen. So, they decided use room humidifiers instead of oxygen. Her secretions are less each day and she is so ready to get rid of the trache. Her eating was great today and her mouth opened so wide and she was able to move food from front to back well. I also realized that Jenny, being a singer, had not tried singing with her speaking valve. She tried it and sang a song for us to guess. Obviously, she is still making basic sounds, but her friend guessed correctly “I Am a Child of God”, just after a few sounds/words. She definately makes more sounds and has better use of ehr voice when she sings, and she requires less spitting on me to make it work (notice I said “less”, not “no”).
In physical therapy, Jenny was able to hold her head up on her own for 15 seconds at a time while in a seated position on the therapy table. She looked so great. Of course, she is such a perfectionist and feels she is not doing well. I asked if I was in her place and did what she did today if it would be a big deal and she indicated that it would be. So, either she expects too much of herself or too little from me.
Missy was helping out with me today and we decided to experiment with what would make Jenny most comfortable. There is a second bed in her room and Missy would position me and put pillows under me like we do for Jenny. All the while, Jenny is watching and having a huge laugh. From my brief experience, I had a short look into Jenny’s life. There are no comfortable positions and the pushing and rolling is uncomfortable. My nose itched and Jenny liked me knowing that little detail and indicated that this is one of her personal torments, on top of everything else. The first thing I did when I got up was to itch her nose.