First off, today we are all celebrating Nancy's news of being CANCER-FREE! We love you so much. Grandpa and I hope you had a terrific day, Nancy :) Grandma was just as pleased as us to hear this good update.
-Elizabeth
Highlights from Friday, April 5:
- Guess who didn't have a catheter today? Go Grandma!
- Grandma worked with the Speech Therapist and Physical/Occupational Therapists
- Grandpa, Grandma, and Lizzie attended a "Care Conference" with key stakeholders involved with her care
- She went outside in her chair to enjoy the warm, sunny Spring day
Details:
Like yesterday, Grandma awoke to Friday feeling a little sleepy and grumpy (that's ok!). Our understanding is that she had a visit from the Speech Therapist (Kristen) and then some nurses came and "cleaned her up." The first thing I noticed when I walked in was that there was no catheter! Grandma was wearing some absorbant pants though, and so the nurses check those carefully to be sure everything stays clean and a UTI is avoided.
Annabelle, one of the Physical/Occupational Therapists, came in next with the muscle/brain pathway stimulator for Grandma's right leg (weaker, post-stroke). This machine "re-educates" the muscles to respond to the brain and therefore improve mobility. Since Grandpa and I remember that this aspect of treatment was one of Grandma's least favorites, we decided to engage Grandma in conversation while she underwent this therapy. (NOTE: During PT after her foot surgery, Lizzie had to endure many sessions with the same type of electrode machine-type treatment. They put these sticky pads on your skin that are connected to wires. The therapist gradually increases the strength of the stimulation until your muscles quiver involuntarily. It can be very uncomfortable, especially in the first few sessions of treatment). So throughout this particular session, Grandma did great. We spoke about upcoming news of Nancy's test results, my dad's eye surgery, and what April weather was like in Holland.
I personally was a little displeased with Grandma's nurse's aid today. For some reason, she did not separate soiled papers from a pile of used gowns/laundry items, so these (linens and trash alike) were all heaped on top of the trash can and pretty smelly. I asked twice for someone to come in and remove/sort these items, because in the meantime we had no trashcan to use. Strange! Even during the week, staff can be a bit unresponsive at first - and it sounds like some aids are more competent than others. On the contrary, Grandma's actual nurse (Jenn) for the day - she was very good.
The morning was filled with anticipation for the 11:00 am "Care Conference." We decided to have it in Grandma's room so that she could attend comfortably, as well.
Here are the basics from that meeting
***
Attendees - Speech Therapist (Kristen); Dietician (Alicia); PT/OT's (Annabelle and Trish* she's my favorite!); Social Worker (April)
Speech Therapist and Dietician: Have been helping Grandma to eat trials of pureed food and drinks with a honey-like consistency. On MONDAY, April 8, she would like to officially launch Grandma on a formal puree diet. Will need one-on-one supervision, since she is still mastering the muscles involved with swallowing. Plan for now is to continue on G-tube feeds with this diet. Grandma needs to finish 50% of her plate of pureed food before they can remove the G-tube. Grandma is weighed each Tuesday. Her weight has decreased since hospital discharge: used to be 122, now she is 117. She currently takes 7-9 seconds to swallow puree and/or liquids, which for us only takes 1-2 seconds. ST is open to teaching Grandpa how to supervise Grandma's eating so that he may feed her during the weekend (get some more practice when ST is not there). *ST stressed the importance of minimizing distractions while she is holding therapy with Grandma.
Annabelle: We are still working on the basics: strengthening her "trunk"/"core" muscles so that she can sit independently. Although she may often feel sleepy or too tired for therapy, it's important to get her going as much as possible. Build up stamina. *Annabelle stressed importance of minimizing distractions while PT/OT's hold therapy with Grandma. They say she is "easily distractable" and during this crucial time of re-learning the basics of balance, muscle strength, posture, etc., she must concentrate carefully on the task at hand during the sessions.
Trish: Grandma dressed herself this morning, with help. Combed her hair. Stressed that sitting and keeping balance are two key skills she'll be working on. Strengthening her back muscles is important. Recommends that Grandma speak with the in-house psychiatrist or at least chat intentionally with someone about the drastic changes that may take place now that she is recovering from a stroke. Given how active she was before the stroke, Trish has concerns that Grandma will become discouraged and wants to be sure she is fully aware of what happened to her body and how she can overcome. *(I really like Trish. She seems to have a true therapist's heart - she is firm without being callous or strict. She is also super knowledgeable. I hope Grandma works with her more in the future!)
Answers to our questions: For now, the best ways we can support Grandma are 1) helping her build stamina by not immediately going back to bed after therapy - encouraging her to stay in her chair or sit in her chair with a magazine or look out the window; 2) encouraging her to actively participate in therapy and concentrate - which may involve us taking a step back occasionally and letting the therapists work with Grandma one-on-one; 3) letting her sleep - especially on a weekend day when she does not have an active schedule of therapies (usually some therapy, with the exception of Speech Therapy, is given either on Saturday or Sunday). Sleep is good medicine because it helps her rejuvinate and heal.
***
After the "Care Conference," Grandma had some Physical/Occupational Therapy. She practiced standing up, which according to Grandpa was a little painful for Grandma today.
In the afternoon, we visited Grandma again and ran into Andrea Lev, the Administrator of Heritage Harbour Rehab Center. She had a very long and genuine conversation with us, and specifically addressed our concern that Grandma was not getting sufficient swallowing/eating practice on the weekends. I did not understand a lot of her explanations - mostly because it involved many details about Medicare that I do not understand - but what I gathered is that they keep track of the minutes of therapy Grandma gets each week. The institution is reimbursed for those minutes (?). The max level of reimbursable therapy per week is 720mins. Some weeks, Grandma gets 810 mins - so she is actually exceeding this top eschelon and getting more therapy than was necessarily promised to us. Andrea is very conscientious and said she asked Denzel (Head Therapist?) for a printout to see exactly the minutes Grandma has been getting, and shared this information with us.
Andrea said she will be on duty one day this weekend and encourages Grandpa to seek her out if he has any questions or concerns. She also shared a story about a man who had a very severe stroke who began very much like Grandma (little core strength, could not walk or sit up). After 45 days at HHRC working with the therapists, he was discharged yesterday and walked out with neither a cane nor a walker! Andrea said she practically burst into tears, she was so proud of him. She is confident that Grandma is capable of the same with some persistence. We cannot let Grandma assume that she will never walk again.
To end the day, we took Grandma outside in her wheelchair with plenty of warm layers and her shawl. Although Grandma was initially doubtful, we knew this would cheer her. And boy did it! Grandma was so pleased to feel the sunshine on her skin and hear the birds. It was a really beautiful way to spend the afternoon with her before she settled back into her bed for a nap.
Cheers to great progress for all today!
Love,
Lizzie
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