Thanks for your kind words again and excellent suggestions.
Gene lost nine pounds of fluid with the combination of Aldactone and Lasix. Unfortunately, the Lasix has made him weak due to electrolite imbalance so we were told not to give him anymore until after Jennifer comes on Monday to check him again. For some unknown reason, this time the majority of fluid was in Gene's hands, face and just distributed through his body. The amount of fluid in his stomach was not enough to cause breathing problems. Yet the doctor insisted it was still Portal Hypertension. Gene has not needed Paracinthesis since his initial diagnosis over four years ago. This is a procedure Hospice might not want to do but if needed we could take Gene to Kaiser for the care. If my memory serves me correctly TIPS is done for hospice patients.
Jennifer had a long conversation with me this afternoon and promised support hereafter for Gene and myself. She has requested permission to come regularly for the next few months to make sure Gene is okay. This is rather unheard of for top management to do hands on patient care. But Jennifer is good and hasn't found other nurses that can deal with Gene's unique issues to our satisfaction. Remember, I've gone through most of their staff previously.
On a humorous note, Jennifer said she is always telling her employees to watch out if any member of her family requires Hospice services. She jokingly said I would lose my reputation for being the most difficult family member in their history and then she complimented me for noticing subtle changes and being on top of Gene's needs.
Lastly, she promised they will be there for Gene and asked if I felt like they were addressing my support needs also. She told me the staff who no longer come chose not to return because they felt so terrible for having let me down and for not doing the right thing when I was depressed and not wanting to live.
I was told to request the TelaCare people to call Jennifer on her cell phone so she can get involved in evening or weekend emergency calls.
And she told me Gene's problems are serious but that he is not actively dying. While I didn't think that was the case, it was nice to know.
Connie, Gene's speech and cognitive issues are not related to high ammonia levels, his rotating antibiotics control ammonia. Gene actually has good hand coordination and no flapping when he extends his hands. With Gene, it's always something different than the typical liver or cancer patient. That's good and bad.
Have a great weekend everyone,
LIVE IN THE MOMENT!
Hugs and Prayers