Today started off in a way that would seem to forecast how the rest of the day would go. I was called at 6am to tell me that Katy was going to be taken to the OR for her trachiostomy. I asked why, as I had been told that it would be a bed side procedure. Actually I was relieved, because I felt that she was safer in the OR, but I was also concerned as to why they felt the need to move her there. The nurse called back at 6:20 to say that the doctors felt that it would be safer in the OR. I got a call 20 minutes later, from a doctor, to tell me the same thing again. I got yet another call 20 minutes later to say that Katy would be going to the OR in a few minutes and that she would be in her room by 10am. I got yet another call 40 minutes later saying that they decided not to trach her because they wanted cardiology to consult before giving Katy anesthesia.
I walked into the ICU at 9am, and was immediately greeted by a chorus of nurses telling me that the doctors were doing a procedure and that I would have to wait. That was going to happen. I went into Katy’s room, only to have the doctors tell me the same thing. I insisted on staying for the procedure. For the record, there is a generational inheritence of misinformation among most medical staff. Rules for “visitors” do not apply to “powers of attorney.” The legal distinction is that “visitors” are there to visit, while, legally, the person holding power of attorney is to be treated as if they were the patient themself. That means that I legally have access to every procedure that I choose to. Hospital policy plays no part of determining what I can, and cannot, see. This is of utmost importance if you are advocating for someone. Though not pleasant, what is under the bandages, in her lungs, etc is paramount in helping me to make important decisions. If I rely soley on the descriptive terms used by medical staff, then I am at the mercy of there criteria for each of the terms used. That is not acceptable. It is my job, and, in fact, my legal responsibility, to be as informed as is possible. The procedure this morning was to scope the airways leading to Katy’s lungs. I got to see the images as the camera went down the breathing tube, into each of the two passages leading to the lungs, and all the way to where the tube divies into the smaller branches of the lungs. The camera can’t go farther than that. Dr. Hunt stood with me and explained everything as I was seeing it. The scope did not reveal anything such as inflamation, mucus plugs, etc that could indicate that the area could be the source of the problems in the lungs. The X-ray does point to the fact that Katy still has some pneumonia residing primarily in her right lung.
There was a cardiologist sitting at Katy’s station when I got back for the 11am visit. I told her that I had questions, and she replied that I would have to wait until she returned with the attending cardiologist in a little while. I have a problem with this. My problem lies in a lone doctor sitting at my wife’s medical station, reading Katy’s charts, and not being qualified to answer questions. My other problem with the scenario is that cardiology never returned to see Katy. Not once! I sat at the hospital all day, not even leaving for errands/administrative, so that I could meet with doctors that told me they would be there at noon, 2pm, before 5, 5:30, and, as of 6:30, were unable to be reached. This is 100% unnacceptable. For some reason, cardiology and psych scatter like cockraoches in the light whenever I request a meeting. I am so disheartened by this, that, if both of them do not come to find me tomorrow, I will file an official complaint with hospital administration, and possibly the ethics line. I have requested to see them on multiple occasions, and I haven’t even received a message saying that they were unavailable. Considering the critical condition of Katy, I am quickly running out of patience with their delays. I have expressed my concerns with the social worker and the case manager, and the issue still hasn’t resolved itself. Tomorrow will be the deciding factor in whether we go forward using the existing model for communications, or if we have to involve people at higher positions within the establishment. This problem is compounded by the very few nurses (most of the nursing staff is amazing) that are just as passive aggressive regarding communication with medical staff. I called the hospital last night to verify a term regarding Katy’s heart condition. It is important that I have the correct terms as I relay information to other doctors with whom I get second opinions from, and as I relay information to our family. This nurse told me that she didn’t know, and that when I came in the next day, if they had time, a doctor might be able to help me with that. Once again, unnacceptable. Luckily, these issues are in the minority, but all the more frustrating because they seem to occur only when time is critical.
I raised a concern about the sodium chloride that Katy is getting through her IV. With a swollen heart, sodium chloride can cause the body to retain fluid. Though they didn’t seem to think it was a major factor, and they do not want her sodium levels to drop too low, Katy is a little high on the sodium levels and they are switching to sodium acetate for a while. Though there is no indicators of a viral infection, I am going to ask that the infectious disease team does one. The doctors didn’t feel that that was needed due to Katy’s lack of indication, but Katy also didn’t have the indicators for strep A in the beginning. I am not prepared to wait until it is too late to see if we can find a virus. SOMETHING is causing her fevers, and saying “we don’t think that a virus is the cause” is not a good enough reason not to do the test. I want us to be as damn sure as we can before we rule anything out.
For most of today Katy was awake, in a good mood, and I enjoyed spending time with her. I brought her a cd of songs that I have recorded, plus one classical guitar piece from a student of mine’s younger brother, Dylan, and she listened to the music as I massaged her, doused her in lavender, and talked with her about the upcoming visit by Betta and Thom, and the following weekend’s visit with Jake. Katy retained a lot of her memory this time, and was really up to speed. It is amazing how much her and I can communicate without her being able to talk. After two days of near non-responsiveness, it was so nice to see her eyes wide open and her smile.
I think what has been bothering me the most is the idealogical battle seems to be the battlefront for my frustrations. While Katy getting well is the primary concern, how we approach getting her well is, at times, troubling. I hear the phrases “standard of care,” “protocol,” and “not indicated” every day. I have heard it said that doing the same thing over and over, and expecting different results, is the definition of insanity. With a mortality rate of (depending on who’s numbers you believe) between 70% and 97%, why on earth would you keep doing the same thing? No one with half a brain would invest money in a business with those numbers, why are we so accepting to invest our faith in medical procedures with results that bad? I’m not saying that there is no merit to any of the procedures. Most of the procedures are why Katy is still alive. It is the mindset that bothers me. Why do I have to ask for a virus test? If Katy has an unexplained fever, and she is not testing positive for bacterial and fungal, then why the hell would we not test for a virus? Why is it so unnerving for the medical staff to deal with a husband that wants to be informed? Though there are those that are very willing to keep me in the loop, there are those that I have to “educate” on an almost daily basis. Why are the doctors so willing to discount items, such as my request for a swab to see if Katy had a yeast infection, simply because they don’t think it could be the cause? We are dealing with a WHOLE lot of “we don’t know.” When that is the case, NOTHING can be overlooked as a possibility…especially in a case as rare as Katy’s. This approach to medicine is part of what Katy and I have fought against in our lives. The “standard of care” seems to be stand by the dyke and see if it springs a leak. I say we shore up the dam before it leaks. It may still spring a few, but we will have less to deal with, and be more prepared to do so, if we are proactive instead of reactive. Not my thoughts…my beliefs. I do believe that the staff cares a GREAT deal for all of the patients. It takes a special kind of person to work on the 6th floor, and I applaud them for being there. I do, however, hope that this message will sink in to at least one of the medical staff that reads this. Though there may not be a study to show the tangible effects of having music, massage, family presence, etc, the results of the patient having exposure to things that are important in their life outside of the hospital , cannot be underestimated. Sometimes we all can be buried too deeply in the areas of our own expertise, and, as a result, can miss the obvious. I wouldn’t care if it were my car, or a guitar, but this is my wife, my lover, the mother of my children, and my best friend.
I will write more soon.
Love to all,