Peggy had a nice long visit with Denise today. Denise was checking in with Peggy on many issues such as her pain and other medical concerns. Denise also brought up some tough but important stuff. Dr. Davis and HCA and everyone really want to be sure that we have a plan in place IF and WHEN Peggy should lose her extra-ocular movement. While it is not common for people with ALS to lose this function, it is possible. We want to make sure that we have a way for Peggy to communicate her needs and wishes to us should she lose her ocular movement.
As of now, we are planning to ask Evan/Archinoetics (the Brain Wave Guys) to come in and practice getting yes/no answers from Peggy by tracking her brainwaves. If she were to suddenly lose her eye movement, this could be a way we could communicate at least yes or no. Denise assured Peggy that she and Dr. Davis are not bringing up this issue because they are worried that her eye movement is going to go soon, but rather just to be prepared for anything. It is the smart and responsible thing to do to discuss these issues now while we can communicate clearly with the spell board.
Peggy told us that she is very interested in being able to someday participate in a gene silencing trial that would see if the ALS gene she has could be "silenced". I spoke with the doctor conducting this trial a few months ago and he confirmed that the ALS gene in Peggy's family would indeed be "silenced" - this is big news since there are many variations on the SOD1 mutation. However, Peggy did not qualify for the first run of trials since she is on a vent. He thought that perhaps within a year she might be able to participate. Also, this gene silencing therapy is not intended for those that carry the gene but are not showing symptoms of ALS yet.
The bottom line is that Peggy expressed that she really is interested in helping her family by participating in any trial that she can. She says that she is concerned about others having to face this illness. She also is interested in preserving her extra-ocular movement.
Peggy talked a lot about her pain and other medical issues. Here's the summary:
Peggy's pain is chronic. It is mostly trach, eye burning, and aching in her right leg where she broke her ankle in 2002. Also, if the chin strap is off too long then her mouth dries up and her saliva burns her mouth. She also has pain in her mouth where her teeth are shifting and she thinks that perhaps they may be chipping too.
She's worried also that her mouth/jaw is getting stiff and harder to close. It feels like it is going to "freeze" up. She also feels like her neck is going to "break". Denise assured her that Dr. Davis says this is very unlikely. However, they are ordering a hard neck brace and some arm slings for Peggy that she can wear especially during transfers. This would give Peggy more confidence for sure. They will be sending someone out to fit her for a brace soon.
Denise made some suggestions regarding Peggy's pain managment as well. Dr. Davis has decided to switch from Motrin to Aleve. He says it may last longer than the Motrin. The trick is that Peggy doesn't like to be sedated, so they have to find the right amount to help the pain without making her loopy. Peggy says that if she stays ahead of her pain with oxydose she does pretty well.
So...on to other matters:
A reminder from Cory - Peggy is taking Ferrus Sulfide which is an iron supplement. It can be very constipating, so please be sure to give her normal 60 cc of prune juice at 6pm. Don't forget!
Another reminder - PLEASE DON'T LEAVE MIXED MEDS/VITAMINS without letting the next shift know what they are!!! Also, please please please be sure to take the time to clean the syringes before you leave! Otherwise they are so hard to get clean.
BATTERY UPDATE: Our spare battery still never arrived. Denise called Nancy from Respiratory to let her know that the battery we do have is not charging! The yellow light on the charger was blinking indicating that it was not actually charging the battery. Also, we have only been getting 2-3 hours on this new battery.
So, Denise took the charger and the battery to test it at her place to see if it was our "wiring" as Respiratory suggested it might be. She also has a battery that has 8 hours on it so she was going to bring that back to try it out with Peggy. BUT, when Denise tried it out at her place, the charger wouldn't work on either our battery or hers, so she is going to Respiratory to get a new charger. That's where we're at. I can't believe how much battery drama we've been dealing with. This is such a critical issue.
Peggy made a lot of progress on her Christmas sorting thanks to Marvel and Betsy. Marvel had to leave early, so they rescheduled Peggy's nose painting for later.
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