VNA Hospice First visit

Today a visiting hospice nurse came for the first time. Friday was also a big day.

This was all decided when mom went to see her Nurse Practitioner and her Palliative care oncologist. Her primary oncologist, Dr. A was away this week. Otherwise he'd be very involved in her care and decision making.

The NP saw her and talked about her DNR, we reviewed the paper work that we signed a year ago. She made sure mom was aware of the changes occurring.

They gave her IV pain meds and nausea medications. Then the Palliative care team came to see her, there were three people there. One was an oncology pharmacist. They worked together to come up with a new plan.

Right away they called a company and ordered a pump to be delivered the same day. Saturday the hospice nurse would set it up.

Her oral medications were not working so this is a subcutaneous tube that delivers constant medication at a steady rate and then she can press a button to receive an additional bollus every 15 minutes.

They sent her over to BWH after that to have a paracentesis. It is like an amniocentesis but not nearly as much fun. They used an ultrasound and guided a needle to the pockets of fluid that have been collecting in her stomach. They drew out 1800 milliliters of fluid (close to 2 liters).

When we came home, however, the fluid continued to drain from the small needle puncture site. We've been making sure her bandages are dry to avoid infection.

The hospice nurse reviewed her whole medical history, social, family, and set up the pump. The visit was very long, close to 3 hours. She was very helpful.

She said that the fluid from her belly even after the paracentesis is normal for a cancer patient.

Unfortunately after she left mom did not have a very good night. Her pain control has been extremely poor. It is nice that we can call hospice 24/7 and they are there and will even come out to the house. They taught me how to increase the rate of medication and she's had a little relief. But she's still not doing well.

I want to thank all of the friends of the family who visit bringing with them food, support, and cheer. You all take time out of your busy days to see us and we could not get through this without you.

Of course we wish Bangladesh was closer but we feel the love all the way from there as well.

I will write more when I can.

Problems with Clinical Trial

Mom went to the doctor Friday with Parveen. She was supposed to start on the clinical trial but the doctor thought her pain control is poor.

They gave her pain meds intravenously and fluids. Friday night she had a very terrible night. A new symptom is that she's having trouble breathing due to the fluid in her belly that's pressing on her diaphragm.

She has an appointment in April. I will post another update as soon as I know something.