Hell night

Hi everyone:

Were you anticipating that this morning's blog entry was going to sport a celebratory theme--all balloons, streamers, confetti and such? I know I sure did. Alas, Patty knew that when her story was made into a movie, a plot twist would play better with audiences--so she delivered. The most frustrating part to Patty, to her doctors, nurses and to me is that this experience, which I'll describe shortly, could largely have been avoided. Not to preach from a soap box, but anyone considering a procedure such as this needs to make sure the lines of communication are clearly defined, because miscommunication leads to comedies of errors. Unfortunately, these comedies are like Tyler Perry films--painful to watch, not at all funny, and incessant.

I left the hospital last night shortly after 8pm, feeling confident that Patty would at last have an uneventful evening. Patty had resolved the "poop" issue, and that's all we'll say of that. Kelly had been wanting a "slumber party" of sorts with her mother, and we saw no reason to object. Over the course of the evening, Patty called me several times, and I must have been missing some subtext, because she was actually sounding a bit crazy to me. She just seemed to be getting increasingly overwrought about some exchanges she was having with nurses, and irritated with me for not getting what she meant. I offered to return to the hospital, but Patty said no, and things were left at that. Of course, knowing what I know now, I feel like an idiot.

At around 1am, Kelly called me to let me know that Patty was in as much pain as when she came out of surgery, so I came back to the hospital and spent the night. Over the next little while, the whole picture of what was going on started to become more clear.

Early in the evening, a tech from the pain management service visited Patty to discuss a plan for managing pain when Patty came home. The biggest issue has been that Norco, the current narcotic that Patty is using, is reducing the pain but still allowing enough through that Patty has difficulty functioning. Doctors have been wanting to move Patty off I.V. pain medication (Fentanyl) because she can't have it as part of her regimen at home. Several possible options for drugs that could perhaps "bridge" between Norco doses were dismissed because of the associated dangers to heart failure patients. Patty had been using a topical pain relief patch (basically to numb the area near her incisions); this offered some degree of relief, but was DC'ed.

The I.V. medication seemed to still be the best option to get Patty through the night. However, for reasons that baffle just about everyone, they decided to leave the I.V. pole with the medicine in the room, but not connected to Patty. Theoretically, the pain management people wanted it there in case Patty needed it; unfortunately, the communication aspect fell through, so as far as the nurses were concerned, it was basically just a decoration in the room, not to be touched.

What's more, Patty was supposed to be able to receive an I.V. dose of Benadryl late in the evening, because we had discovered it made all the difference in getting Patty through the night. Somehow, the Benadryl and the Fentanyl were both DC'ed, so Patty was pretty much flapping in the wind in terms of pain management through the night.

When Patty pressed the issue, the nurse told Patty, "I don't want to bother the cardiologists at home over this," so instead she called a colleague of a former G.P. of mine, who I haven't even seen in years, and asked him to make the call about Benadryl. The only reason this doctor was on the records at all was that Patty long ago needed to name a G.P. for admission to Edward Hospital; since her own G.P. had just retired, and Patty had seen my doctor once, we listed his name. Subsequent to that, we have provided a name of another G.P., but that somehow didn't stick. With no knowledge of Patty or what she was going through, this doctor decided that Patty could have Benadryl, but only an oral dose, which was useless. Is anyone saying, "Huh?" yet?

As the evening progressed, Patty's pain worsened. By 1:00 am, even a recent dose of Norco did nothing to touch the pain, especially when Patty got up to go to the bathroom. Kelly went to get the nurse, who offered morphine instead of the Fentanyl, and said that the latter was not an option.

Kelly called me at home, and their slumber party was over. I came back to the hospital, and things just got more surreal. Finally, the pain management service was called, and an anaesthesiologist came by. He seemed a bit irritated that more pain solutions were being called for in the middle of the night by a patient hoping to go home the next day; basically, he was saying, "I can give you the Fentanyl, but it's a step backward." Ultimately, we persuaded him to give Patty the I.V. Benadryl, which helped get her through the night.

This morning, the study coordinator Jeanne, Dr. Costanzo and an associate of hers, were none too pleased with what had happened. We're still hopeful that all of this can be resolved today, so that Patty can go home. The biggest bright light in all of this is a new nurse for Patty, who is (a) hilarious, (b) a little intimidating, but in a good way, (c) an absolute advocate for her patients, and (d) adorable. I told Patty that I thought I had a bit of a crush. This nurse seems like just the person to be helping Patty along on a day she's hoping will end with a car ride home. We're formulating our plan to kidnap this nurse and take her home with us.

Love,
Brian

P.S. For anyone who doesn't know Patty personally but may have happened upon this blog because you're a candidate for the HeartNet procedure, know this--in spite of all the pain and frustration, Patty still has no regrets about participating in the study. Just make sure you ask lots of questions, be sure of the answers you're getting, and insist upon clear, open communication throughout. Time will tell if the HeartNet will make any real difference, but Patty is an optimist, so hope is a good start.