8.27.21 More of the Same

Aimee is happy. 

That is what matters most right now. Aimee is home and happy and fairly comfortable. 

Things haven’t really changed in her health. She is still relying on her bipap most of the time. She is having more muscle spasms than typical. She is at about 70% of where we would like her to be hydration wise. Not optimal. One issue that we are having with the lower hydration level is some challenges in clearing thicker secretions. This causes more difficulty with maintaining oxygen levels and a risk for sticky mucus plugs, which can lead to pneumonia. It isn’t severe currently, but we would like this to not be her maintenance level. It is less comfortable for her and gives no buffer at all. 

Monday we had our first visit with the Palliative/Hospice Care nurse and social worker. They will be coming back again on Thursday and every week or two going forward as long as we choose to continue. I am excited about their role. They will help us to keep Aimee home and provide comfort care options while still allowing us to seek curative care. They will assess her health trends with us, get us prescription changes, help our family process, make sure we have resources, connect us directly with specialists, help us decide when interventions are in Aimee’s best interest, train us on emergency care, ect. They will help us respond to emerging problems to avoid crisis care/trips to the hospital. I don’t think we quite understand all that this service could mean for our family going forward. Right now they are trying to get to know us and Aimee. Currently they will be specifically helping us with pain management, adjusting meds, and dosing CBD oil. 

Yesterday I spoke with Aimee’s GI specialist again. We are making more changes. Apparently the Imodium medication can increase urinary retention. Last week when we communicated, the doctor was concerned that the medication was causing low urine output. She didn’t realize that we are already on a cathing schedule with Aimee. Now knowing this, she is re-increasing the Imodium over the max dose with the willingness to even double the max dose next week if we still don’t see improvement. Please let there be improvement!! 

Walking the fence, tracking her numbers each day and hoping for improvement and worries about bad days becoming a new trend… well we would be fine with this all settling down so that we could feel secure at home. :) This is where Aimee wants to be too.