Family

May 12, 2004

Jenny had a difficult morning yesterday in which she was flexing and twisting her whole body in painful ways for much of the morning. I am not sure what triggers these spasms, but it interferes with her ability to do anything on her own.
There is talk about removing her cathater and trach in the next couple weeks. Jenny is more than excited for those to go. We have been discussing more future plans, which seems to be going well, with some emotional times, but generally productive outcomes. We are looking into buying a van and doing some renovations, which will make life more enjoyable for Jenny. Jenny has become really comfortable with some of her nurses and she is working well with her therapists, despite reporting constant disomfort and severe pain in rehab exercises.

Jenny has tried to manipulate me into staying overnight any way that she can. I finally gave in again, but I now have to be gone during the day hours to catch up with errands I need to run and to spend time with the kids. I realize her concerns since some of the night nurses are not around her when they can see family interact with her and learn her communication, as well as her likes or dislikes. As much as some nurses try, I doubt they really know what Jenny needs. Others do really well with her. As for today, she has a sub nurse and tech who do not know her. That is no big deal since the family does most all of the care from dressing, feeding, moving, and cleaning during the day hours. Missy and I are pretty good at manual transfers, so that is going pretty good for us right now.

May 10, 2004

Jenny has been eating anything and everything that we can bring her. She ventured to try food from her puree tray on Sunday after I tried it first and gave the okay. Oddly, the item she ate was chicken noodle soup, but it was the only thing not watery or runny, whereas the meat, vegatable, bread and cookies were all a liquid consistancy. Go figure.

We have family home evening at the hospital tonight and we sang a primary song in rounds for an opening song. The girls sang the first verse, which put Jenny into tears because it was so beautiful. Zach and I sang the second verse which also brought her to tears, but only because she laughed at our singing. We had cotton candy for our treat. Cotton candy has to be the best treat for her so far. It just melts in her mouth.

Mother’s Day 2004

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.

May 4, 2004

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.

May 1, 2004

Jenny has completed her first week of more intense rehab. I see her fighting the pain and discomfort during all of her treatments. She spelled out that she is tired of tests. I do not blame her. I hate seeing her tremble each time they say she needs a new MRI or x-ray.

During therapy, she grits and bears the pain. On a scale of 1-10 (10 being the highest pain), Jenny reports feeling a “9”, but will still allow the therapy to continue. I think I need to sew on cape on her clothes since she is my new super hero. Her pelvis or tail bone has been hurting her, so the harder therapy tables are even more uncomfortable. We had a better afternoon as she ate foods for pleasure and she laughed at the jokes that her mom and my sister were throwing out. They ended up with a chick flick before bed, so Jenny was in heaven for a few hours today.