Jenny seems to be doing better at home, and appears more happy to be with the kids. Of course, being at home with the things she loves reminds her of what she can not do and it is difficult emotionally. I think she tries to get out of doing some therapies, but we encourgae until she gives in. She has a lot of emotional periods, but they seem to be brief and less traumatic. She has had fewer periods of spasms and her neck appears to have had favorable results from Botox shots since it does not pull to ther left much (however, she will not admit that the shots were worth it) and her ankles appear more loose. The kids are warming up well to Mom being home. They are coming in more to snuggle an show Mom things. Zach is always looking for someone to watch him champion his gameboy games and now he has a captive audience. Jessie saw Mom’s feeding tube and she wants one too. Jessie thinks that her mom is cool because food gets in her tummy fast without having to go through her mouth.
Author: jenannlynn
Jenny came home today!
Jenny was discharged today with the intent to continue therapies at home with home based therapists and nurses. I dared not mention the possibility of her coming home with the possible outcome of her not being able to do so again. She still has her trache and all, but she is doing well. Her first day was quite overwhelming for me since it seemed like it was more difficult to juggle Jenny and the kids at the same time. I can not deligate the things like comfort and affection that is needed of a father and spouse, but I would not want to give those jobs up anyhow. We have a home health aid and the usualy cast and crew of the last few weeks which has made things better for Jenny and I. I assume that we all will get use to a schedule and make it work to where things are second nature. I am sure Jenny will enjoy her first nights sleep free of being woke up to see if she is sleeping okay.
May 20, 2004
I dare not try to give an estimated discharge date, but I think it will be soon. Jenny’s health has improved and she is getting stronger. We see definate movements in both hands, but mostly in her right hand where she can move her thumb and now her pointer finger at any time. She recieved Botox shots in her neck and ankles to relieve the muscle tension that causes those parts of her body to turn abnormally because of constant spasms due to any sort of stressor. She is not pleased with the doctors who did not tell her how long the needle would be. As I watched, I even expected the needle to come out the other side. She was brave though. I can tell that Jenny needs to come home and be with the family. She has been gone so long and I notice that she is resisting therapy at times. Perhaps things will improve once therapy resumes at home. She still has her trache and other tubes, but hopes to get them out soon- most likely not before going home. Her respiratory health looks as good as ever though, so it should not be too long.
May 17, 2004
Jenny will most likey be in the hospital for a few more days. Jenny agrees with the delay and has some goals in mind to achieve prior to coming home. She is doing better today and began the day more relaxed until a horrible experience with a respiratory doctor whose lack of bedside manner and negative comments put Jenny into extreme emotional distress that she had painful body spasms that lasted a few hours and had to miss rehab in the afternoon. My stomach was in knots as I saw Jenny sweat and shake as she never has before. This guy’s behavior was more than accidental words or bringing up sensitive topics. He will no longer have contact with Jenny.
As for some good news, Jenny was moving her right arm in a way I never have seen before during some spasms. I could not get her to repeat the full arm movement, but she had definate control of her right thumb to the point of raising and lowering it on my direction (I have video as proof). All I know is that this is the same thumb that I use to control the remote, so her life is going to be pretty good. Seriously though, if this become stronger, it has solved our speaking board problem since the blinking sensors do not seem to work. A finger switch would be much more effective.
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.
JENNY LYNN'S NEWS 