Tuesday, May 25, 2010

Patient Advocate

Well, today was another frustrating day.

1. My parents have been told that once he gets his stomach drained it will improve many things. First, his nutrition level. Hopefully he'll be able to eat more and vomit less. Second, the swelling in his body will go down. Third, his kidney function should improve. We also found out that draining his stomach is directly related to radiation. I'll explain that in a minute.

2. You won't believe this. Today the same doctor (Dr. M) who forgot to schedule his appointment on Monday walked in today and said, well, I canceled your procedure today!!! My parents were shocked!! Why? was their first question. The doctor didn't have a good reason to cancel it. After my mom started explaining all the reasons to have the procedure the doctor started back tracking and said she'd reschedule. The next doctor walked in and said Dr. M said someone canceled the procedure. My mom was sure to inform him that SHE/Dr. M canceled it. Apparently Dr. M is now acting as if it wasn't her decision. Dr. M. then disappeared and left the building for the rest of the day.

3. Last night they were suppose to have a tube placed in dad's nose that went to his stomach and drained it. We were told last night this tube was for his stomach procedure. The person trying to place the tube couldn't get it to work and decided to quit. She assured my parents that this would in no way affect today's events. Well, my parents received a call today saying my dad could no longer receive radiation because without the tube he'd be a liability. My dad asked to be wheeled down to radiology anyway and to speak with the anesthesiologist. It turns out that having his stomach drained is a crucial part of radiation (another thing Dr. M didn't mention or know). Without the stomach drained the anesthesiologist is worried he will asphyxiate on the table. It is against their policy to put someone to sleep in my dad's condition. Also, Dr. M was suppose to order an ultrasound on my dad's leg to make sure he didn't have a blood clot. Without the ultrasound radiation didn't want to work with him because if he did have a blood clot it could move to his lungs while they were working on him and he could die. The anesthesiologist was really great and helped my mom and dad a bunch. First, she called Dr. M and gave her a talking to. She told Dr. M that if she didn't get his stomach procedure rescheduled she would be to blame for him not getting treated. The anesthesiologist then went outside of protocol and treated my dad anyways. My parents had to sign a waiver acknowledging all of the risks involved. Also, the anesthesiologist called a patient advocate for my family. My mom left a message and hopes to hears back soon.

4. Today the radiologist mapped my dad out for radiation. It takes a great deal of planning and the first session always includes mapping. He didn't actually receive radiation today but hopes to tomorrow. Radiation is scheduled at 9a tomorrow morning. If he doesn't receive the stomach draining today he will not be able to get radiation tomorrow. Please pray that Dr. M. can fix her mistake.

5. The doctors keep telling my dad he can't receive chemo because his nutrition levels are so poor. It's interesting because without his stomach drained his nutrition can't improve. What's even more interesting is Dr. M keeps putting in Dad's chart that he is only allowed clear liquids or no food/drink at all. It's usually related to the fact that she has a procedure scheduled, but in the end she seems to never follow through with the procedure. Today my dad was really weak and had a terrible day because he hasn't had any food in at least 48 hours due to this doctors scheduling conflicts.

6. I just found out they are doing the ultrasound on his leg right now. Hopefully we will find out if he has a blood clot soon.

7. The anesthesiologist suggested my parents talk to the patient advocate about getting my dad the pain medication dispenser that dispenses medication when he presses a button. Right now it takes sometimes 1/2 an hour to get pain medication because they have the drugs under lock and key. They must wait for the nurse that can open the drug cabinet.

8. On a positive note, the nurses are great!

*I'll let you know if anything productive happens. Please pray that his stomach gets drained tonight!!! Without it we are at a stand still.

I'm trying to speak the facts without getting too frustrated. Doctors are only human. My parents say Dr. M is really nice, but unfortunately hasn't made the best choices. Hopefully she can correct everything and my dad can get things moving. Each day he doesn't get something accomplished is another day he can't receive chemo. I'm scared to think where the cancer may have spread while we've been waiting for doctors to decide a treatment plan. It's been almost 2 months since chemo!!! Thanks for the prayers!!!

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