July 22, 2014

Nightmares Continue

Last week, didn't provide any clarity or peace. My mom's biopsy took longer to schedule than expected. But she found herself back in Vegas sooner than she would've liked. A week ago, we picked her up because her blood pressure was dropping pretty low. Her blood pressure used to always be a perfect 180/20 since her breathing problems started she began getting high readings. So, when they were low, her home health nurse was concerned. We brought her to my house and monitored her blood pressure. By Wednesday, her breathing was acting up again so the doctor advised us to go to the ER to be admitted into the hospital. There, she'd get the biopsy, a port implanted and start on Chemo. We sat in ER for six hours. Only lab work was taken. By 6 o'clock, a bed was ready and she was admitted into the hospital. We met with her oncologist and everything would be scheduled for Thursday. Later, the doctor for the hospital made her rounds and we thought she'd get her medications (we were told she would by the ER RNs and the admitting nurse). Medications weren't distributed until 9:30. A nicotine patch was requested but never issued (she hasn't had a cigarette since 6/29/14, but she does use vapor and e-cigs). I left about 11:15. There was no reclining chair for a visitor to stay the night, so I decided it was best I get a decent night's sleep since nothing would happen until morning, and I wouldn't be leaving once her chemo begun.

Just as I had gotten home, my mom tells me they won't change her incision bandage that is supposed to be packed twice daily. I last did it, about 11 am. They refused because they didn't have doctor's orders. We told six different people it was needed, including the doctor making rounds and her oncologist. There had to be doctor's orders. We were very clear. After the happenings the week prior, we knew the importance of keeping the incision free from infection. She had missed three doses of antibiotics due to our time in the ER/hospital. There was no way, we felt comfortable waiting until the next day. The risk seemed too great. We insisted the packing be changed. They refused again and again. I was told I could bring my own supplies and change it for her. Best they could do is change the gauze outside of the wound and physical therapy would change the packing the following day. It was unacceptable. I grabbed supplies and drove back to the hospital at 12:45 am.

I was disgusted. If they couldn't properly attend to packing a simple wound, what would happen with complications from Chemo? By the time, I arrived, my mom was so worked up she wanted to leave. She didn't feel she was receiving adquate medical care. I didn't blame her. The staff had also lost my trust. This was the first time, I left her side and this happens. From then on, I'd be frightened to leave just to pee. I tried speaking to the charge nurse, but that failed to help. Her story had changed, she said there were doctor's orders, but they were not specific. The nurses don't tend to wounds, only Physical Therapy during the day. By now, there was no changing my mom's mind, she was leaving. We left against medical advice. I took her home. I changed her packing.

These nurses might have only been doing their job, but it put my mom at risk. If procedures at the hospital are that strict; a doctor needs to be on the floor at all times. Two hours had passed and we were no closer to rectifying the situation when we decided to leave compared to when my mom first called. We called the oncologist answering service and that was no help either.

We waited for his office to open and called to find out what was next? We were told they would get a message to the doctor. We never cancelled the biopsy scheduled at Valley Hospital on Friday (thankfully) so we called them to find out what it would take to make that happen. We needed the lab work taken from the ER at Southern Hills to be sent to Desert Radiology. My mom called Southern Hills to have this done and they said the doctor had to initiate it. She called his office back and they said it takes 24-48 hours for the request. We knew it wouldn't allow enough time. The test was only 20 hours away. Meanwhile, the doctor had called while my mom was on hold. We took his call. He advised she do the biopsy and we'd follow up in his office next week. All was fine, until we explained that we were having difficulty getting the paperwork needed to make the biopsy happen. He grew aggravated and claimed he wasn't our secretary, nor an employee of Southern Hills. We never suggested either, we were simply explaining what we were told and working to find a way to expedite the lab work getting in the proper hands. It was the last thing we needed. Everything had taken it's toll; we were physically and mentally exhausted. All we want is the best care possible.

My mom began to second guess her choice of oncologist. Overall, we are just utterly disgusted with the state of medical care. The system is broken. I'm sure the nurse and doctors are spread too thin, but they are treating people, not sacks of flour. Compassion and care is needed. Especially when dealing with delicate diseases such as lung cancer. I do not believe my mom should compromise. She is literally putting her life in the hands of her oncologist and support team. When you have no control; at the very least you deserve to be confident in the care you receive.

We agonized over all options, we have considered going to Chicago for treatment. Ultimately, my mom decided to have the biopsy on Friday. That was a joke, too. They had her scheduled for a CT Guided Biopsy of the Right Lung. Um, no! Let this serve as a reminder to always read your admitting paperwork! The procedure was delayed a couple hours because they had to sort it out with the oncologist once his office opened. Once, they finally had record of the proper procedure it went pretty quick. The doctor said that he had four good samples to send to pathology. He says they looked good, but I refuse to have false hope. They need to zip their lips until there is confirmation.

We wait until Thursday when we meet with her oncologist to go over the test results. We'll hear about the latest treatment plan, he suggests, and we'll go from there. We have an appointment scheduled on 7/31 with another oncologist in case my mom would like to seek another opinion.

In the meantime, my mom is at home with her three dogs and horse. Home oxygen and home health nurses allow her to stay put, until her appointment or the next emergency. Certainly hoping for the former. I know how awful and stressful this month have been for me, I cannot imagine how she must feel. At the very least, she has earned a few days of peace.


Andie said...

I have been wondering how your mom was doing and now this makes me so bummed and upset for y'all. I hope you all can get some answers soon.

I'm so so sorry. HUGS!

Anonymous said...

You're an amazing daughter. You're doing all you can. The rest is beyond control unfortunately.

KathyinNY said...

I am sad to hear that you are having such terrible experiences in getting your Mom the best treatment possible. I cannot believe the doctor would say such things to you and that the nurses were not more helpful/compassionate. Hugs and prayers sent your way.

Anonymous said...


Just to say you remain in our thoughts and prayers.

Hope your Mom had a restful week...

And you both deserve a long break from that darn "Murphy's Law"

Hope the best news and outcome for your Mom and family.

Kellee said...

Thank you all!