Jenny has had a difficult day today due to a recent congestion that is most likely due to bronchitis or pneumonia, most likely the first. She had her trache changed to a new type that is easier to breath around, so she is feeling discomfort from that as well. She has a fever and her blood pressure is low. She has an IV and they reinserted a catheter. Even I have not realized how much she has progressed until now that I see her in this reverted state where she is void of any movement or expression. This appears to be a short pause in her progression and I see her getting back to her improved state soon. We are aiming for the 18th as Jenny’s date to come home. We had the delivery of the larger home supplies (bed and lifts) today. We are in the process of lining up nursing care for her as well.
Author: jenannlynn
May 13, 2004
It looks like Jenny may be coming home as soon as next week! It is great, yet scary. We obviously do not have the home set up like we want to with renovations and redecorating. They can get the basics in for us to use for a while, but I’m not sure what things will be like at home. Jenny wants to be home, and I bet once she gets a real nights sleep, her strength will improve. I doubt she sleeps more than a couple hours of sleep each night. Jenny seems to be getting more control of her upper body enough to support her weight when slightly supported from behind. Her head still turns to the left, especially when she coughs, which triggers a whole chain reaction of painful spasms in her body. She lets us know that her trach bothers her when her head is turned to the right. A respiratory doc has been asked to look her over to see if the trach can come out, but he has not been up to see her.
Today, Jenny came up the full way on a tilt table that helps strech out her tendons to her foot that are shrinking due to lack of use. She grits through the pain so very well, but sometimes her face tightens up so bad that we fail to know what her blinks are saying. It also interferes with a speaking board that uses a muscle sensor that picks up deliberate blinks. She is getting better, but a laugh or cry will throw it all off.
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.
JENNY LYNN'S NEWS 