May 16,2004

Jenny has shown much improvement and seems to have dropped her temp and is less congested. Her condition was associated with a UTI as well. These are the things we were told we would have to address on a frequent basis throughout Jenny’s life. Jenny has a new trache that has irritated her throat and made itdifficult to swallow. She is unable to trun her head to the right without the trache causing discomfort or coughing. Everyone we tell about this seems to think it is okay, but I feel the trache does more harm than good. Jenny was hoping to have it out prior to coming home. I’m not sure how her discharge will work out due to her current health status.

She has experineced more spasms due to the discomfort and coughing. All it takes is for a cough or strong feelings of emotion to send her into painful, uncontrolable limb etension/spasms where Jenny’s head, arms, and legs twist and stretch in uncommon ways. It is difficult to discuss some topics with or near her without causing emotions that lead to spasms. I fear what will happen once we return to more activity in the community since the initial experiences will undoubtedly be emotional for her.

As with anyone who visits with Jenny, especially for the first encounter, I would encourge people to greet her in a more upbeat fashion and let Jenny know of their love and that they miss her without bearing their soul and causing more emotional turmoil than needed. Hopefully, there will be a day when these spasms will cease and be more controllable. Interestingly enough, even though Jenny has been in more pain and discomfort this last week, she has beeen more concerned with others. She completed the lengthy processing of spelling out her desire for me to start putting together Zach’s birthday party in July (which waiting this long to start is late for Jenny). She had bought all the party supplies months ago on a great sale, so I guess she is not starting too late. I had to promise that I would be anal about planning before she felt confident about leaving the topic alone so I could return to figuring out what I could do to make her feel better.

May 14, 2004

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.

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.