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.

4 comments

  1. Thank you for all of the updates Mark. Your family is in our prayers.
    -The Greens, Jared, Melanie, Hannah and Noah

  2. It’s great news to hear Jenny is going home BUT,I hope they are not doing it to soon. Mark if you are able to provide the care they provide at the hospital then it may be best for her at home. I am concern about her receiving acute therapy as soon as she is able. Which if she is well enough to go home then she should be ready. Acute therapy is 4-6 hours of therapy plus the usual daily getting up for meals, dressing, showering, ect. Have they gotten her to this point? I spent 4 months in the hospital.They had me standing, sitting and holding my head up on my own. I was walking in therapy with a platform walker and therapist assitance. Are they sending her home for you to take care of her as she is? I am concerned it may be happening because of insurance red tape. I see and hear this all the time. Or maybe they really don’t know people can be in this state and recover. I don’t want to seem negative cause I agree home is a good place to be, I just hope she is ready. I wish I could get some feedback from someone on this. Everybody is different but with the fighting spirit Jenny seems to have along with great support I would be asking questions about the therapy. Does anyone have any other opinions about this.
    KAT

  3. Jenny and Mark,
    I am proud of you both. You are definite warriors!! Keep up the good work. I know you are doing your very best. Jenny, you are amazing! Thank you for the continual updates Mark. I put your names in the Jordan River temple on Saturday!! I am praying for you and so are so very many others. Love you guys!!
    Sandra

  4. My daughter Rene’ aged 41 had a stroke on July 28,2003. At first she couldn’t move anything but her eyes. She communicated with her eyes for yes/no questions. She was in the hospital for about a month and then she went to a rehb/nursing home for 6 months. She had a thrach from August until December. She too had breathing congestion problems. She also had a catheter. When she was released from the nursing home. (due to insurance company no longer paying) She went home with a feeding tube. She cannot talk yet and has a motorized wheel chair. She can now eat small amounts of food but is still fed by a feeding tube in her stomach. She is going to start therapy this week but I don’t know how often or how long. Being caregiver is a difficult job. Rene’ seems happy to be home and we can see her making progress every day. She can use the computer and communicates with KAT. Good luck to you. Karen

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