3/19/09 - Back to the ICU

As you can tell by the title, this has not been a very good day for Alyssa. Escalating BP (195/120,) blurred vision, a pulse rate that has been hovering around 120 (new high) and a platelet count that dropped to 119, is sending Alyssa back into the intensive care unit. The ICU staff is better equipped to meet Alyssa's current needs such as the ability to provide intravenous BP medicine. We look at this as a precautionary move at this time. She has had numerous issues for about a week now that we just haven't been able to get under control. The stress of all the above, along with her ever present fear that she will have additional seizures due to the high BP, has really taken a toll on her. It probably is a factor in escalating pulse. It may sound crazy, but she feels very safe in the ICU and is not upset about making this move.

The day had started rather uneventfully. A few minor tests and off to dialysis in the RGH Dialysis Center. After a typical treatment, she returned to her room for her plasmapheresis treatment. Yes, we thought that she had received her last treatment last week, but her platelet count didn't agree with us. I know that we say this a lot, but hopefully this is just a temporary need. Just prior to apheresis, her BP and pulse went way up. She also began experiencing blurred vision in both eyes.

I'd seen enough and immediately put in requests for all of her doctors. I know that there has to be a better way to get this under control and more importantly, provide her with some sense of peace and confidence. She has suffered far too much!

Within ten minutes the "March of the Physicians" began. A new BP med was added; she was taken off iron pills (nausea;) taken off Albuterol (causes increased pulse;) had her eyes dilated and examined - several abnormalities were found, but all are a result of current situation; reassigned to ICU and we are still waiting for the Neurologist. The medical world has become very specialized and sadly, very fragmented. It's like a baseball team without a manager, there is no one filling out the "lineup card" and looking at the role of all the of the players. You become the manager by default. It's an exhausting job, but oh so necessary. I really feel for the vast majority of patients who don't have anyone here to support them. Everyone here wants to be helpful and they try to stay on top of Alyssa's needs; but lets face it, there are just too many patients and too few doctors/nurses.

As I close, we are still waiting to be moved down to the ICU as her room isn't ready yet. She declined to take the first room that they assigned her to, as it was the room that three patients died in when she was in the ICU last time...plus it was room #13. No more bad luck...right now we need some good karma!
dd