We had big plans for Jenny to have good food for Mother’s Day, so we bought the good flavors of foods and made the others that Jenny is allowed to eat. Upon coming to the hospital, Jenny was terrified and in pain. I fear going home at nights because I’m never sure if Jenny will need me. She is still in the frame of mind that it is me who she needs to be there at all times, even though there are many who are willing to help out. It turns out that someone during the night, with meaningful intentions, placed a blanket on Jenny. Unfortunately, due to her hypersensitivity and internal body thermostat, Jenny is always so hot and sweaty in just light clothes. She can barely stand anything on her. She was drenched and in an uncomfortable position. Jenny’s brother, Rob, is with me and he helped get her calmed and feeling more comfortable.
The nurses have taught me all the stuff to do to care for Jenny and I can do almost everything by myself now. I’m still slower than a nurse, but Jenny usually likes it better when I do things like suctioning her trach, showering and all. I definately can position better and faster than the nurses now. Jenny typically needs little or no fine tuning when I get her moved into a new position. It took about 2 hours to get her calm and then she fell asleep.
Things are not all bad. Jenny has been moving her head voluntarily to her right and sometomes involuntarily- but it at least gets her off the left ear that still has a bed sore. I noticed that when I kissed her last night that when I just kissed the corner of her mouth, she turned right. I did it a few more times and she was proud of herself as she met the challenge of turning to kiss me. Even her lips are getting more tone and will almost pucker. I have to add this new kiss therapy to hug and candy therapy.
Jenny was so cute and fun yesterday. We laughed so much and she really seemed to be happy. The only bad time was about 10 pm when I said it was time to go. She does not ever want me to leave, but she lets me go. It is hard to see her have nights like last night and then feel good about leaving. I wish she would let other family/friends sit with her at night or mornings. I just can’t wait for her to come home.