I would like to start off tonight by painting a mental picture of things. I hope that in doing so I can help all of you to visualize what a day walking into the ICU is like for me. I do not feel the need to defend my position or actions, I am doing what I know Katy would want, but I do, in my blogging, try to convey my joys and my fristrations. I feel like we are all sharing this, on different levels, together.
I arrive every morning at the parking garage, circle around until I find a spot, and then do my best to remember where I parked. I am in and out so much, that on mony days I look for my car on the wrong floor of the garage. Then, depending on where I parked, weather, etc, I cross the street to the hospital. I make my through the lobby, past the visitor desk, and down the short hall to the elevators. Once on the 6th floor, I make a right, push the buttin that opens the double doors to the prep area, and then I suit up. I put on the hair net, the face mask, the cover gown, and then wash my hands. I then push another button to enter the ICU. The mechanical doors open up to the same room every time, but the landscape of that room can be different depending on what is happening at that time. I make my way past the nurses’ station (usually saying “hi” to the ladies at the front, make a left turn, and then a right to look into Katy’s room. Katy’s door is a double glass sliding door with built in venetian blinds. The staff can close the blinds for procedures or privacy. Whether the blinds are open or closed is usually the first thing I notice, even before who is sitting at the desk. To the left is the station where Katy’s nurse will sit, and I look to see who her nurse is for the shift. Upon walking into Katy’s room, I make myself aware of a few things, first. First is the temperature of the room. At times, the HVAC doesn’t respond and her room gets too warm. The first thing I see with me eyes is her monitor, and my eyes always make a line for her temperature. The wall parallel to the door is covered in windows from mid-wall up to ceiling. The right perpendicular wall is where the access to air, electrical, and all of the machines are, as well as the head of Katy’s bed. The left wall is mostly covered by a desk filled with supplies, and a small sink that is operated by foot. I say “hello” to Katy as I put on the latex gloves that are located on the desk, and then go to the bed to spend time with her. I wash her face, massage her, change the music/tv, open or close the blinds, and various other things while talking to her. Sometimes I get to brush her teeth, apply lip balm, and help by doing various little tasks that make her more comfortable. I read her news stories, keep her up to date on the kids, tell her what procedures are planned, ask her how she is feeling, if she is in pain, is she hot or cold, etc. I try to answer all her questions, ease her worries about the kids/home, and let her know that I am there for her. Most days, I get to talk to one of the nice nurses about how she did overnight, what has changed in her meds, when bath/wound care is going to happen, if the doctors have come by, which doctors have seen her, and other pertinent information. Then, before I leave, Katy and I kiss through the face mask. When she’s awake, her eyes follow me out of the room. Then I go back out the first set of mechanical (opaque) doors, take of my gown, cap, mask, and head out of the second set of doors to wherever I need to for the 2 1/2 hours before the next visit.
Now, I know that what I wrote is a painfully long and tedious, but can you see it? Can you see it in first person? Can you see it 4-5 times a day, every day, for 8 plus weeks? If you can, then I want you to imagine that you were woken up with a call telling you that the procedure that was scheduled for bedside is now being moved to the OR. Then 20 minutes later, that she is leaving for the OR. Then 40 minutes later that they decided not to do the procedure because they were worried about her heart not being able to take the anesthesia. You have now missed your first visiting time with your spouse, and you are worried about why the sudden concern over this procedure that was sold to you as “so routine,” and “not risky at all.” You get to the hopital, go through the routine above, and then walk into your spouse’s room to find 5 doctors and a nurse getting ready to do a procedure that no one called you about. Though the procedure is a simple scope of the lungs, would you be a little thrown? As your mind is racing from the stimulus overload, the doctor starts asking you to leave. Would you? What thoughts would be running through your mind? Whatever you imagine your answers to be, multiply that by a number you can’t imagine, and add the weight of constant repetition. That is a day in the BICU.
That is what happened yesterday. As I wrote, yesterday was filled with fear, anger, confusion, and a lot of unanswered questions. Today, with the exception of the meeting with cardiology, followed the same path. I walked in to find Katy awake, and we started to what would seem to be a good visit. I asked the nurse if cardiology had been by. She said that they had not, and asked her to see if any notes were added to Katy’s chart. The nurse said that the last note on her chart, from cardiology, was given at 1300 (1pm) the PREVIOUS DAY! The day that I spent looking for answers from anyone who could tell me anything, and I find out that there is a note on the chart. The day that, for only the second time since Katy has been in the hospital, she was so unresponsive that I could touch her eye without her blinking…WITHOUT BEING SEDATED. The nurse could not tell me what the note said. That, in and of itself, is maddening. She went and asked a doctor to visit with me. The doctor came in, the same one I had had the brief altercation with the day before, and said that the note said, and I quote exactly as I was told, “prognosis not good.” Then he said that he couldn’t tell me anything more than that, and that I would have to wait to speak to cardio. Once again, how would you feel? He did say that they did pull blood for viral tests. That is, at least, progress.
The next two hours were hell. I could not begin to write what all went through my mind as I waited to speak to cardio. As I was talking to the case manager, word came in that cardio would like to meet me in the “crisis room.” That is actually a joke on my part. The room is now known as the “family room,” but at one time was called the “crisis room.” When they asked if the “crisis room” was open to meet with me, I didn’t exactly feel warm and fuzzy. Would you? The case manager explained things to me abou the name change, and how some of the people still refer to it by the old name. Anyway, I met with cardiology at around 10am. The meeting was with the case manager, the resident cardiologist, and a fellow. Part of the conversation was that psych would meet with me next week. So far we had addressed two of my issues from the previous day, and cardio was number 3. The abridged version is that, though Katy’s heart is “really depressed,” it will more than likely get better with time. There is always the possibility of heart failure, problems, etc, but that, due to her age and level of health, it is feasable that she will reacover with time. Her fluid output is getting better, and is getting closer to the point that they would like to see it. Her albumin is low, and they are addressing that. The heart damage is functional, not physical. That means that her heart is “stunned,” and therefore nor moving at full capacity, but does not have any holes, tears, or scars. The good news is that Katy’s urine output, blood pressure, and lack of need for a heart pump are all good. Her mental status appears to be good, and she is well enough to receive beta blockers 4 times a day in 25mg doses. We also discussed the requirements for Katy to leave ICU and return to Houston. I know I have talked with other doctors anbout this, but I want as many opinions as is possible.
Once again, the major frustration of the day was one of communication. I have had several doctors come up to me and tell me how much they think about Katy, and how much it affects them. While that is sweet, they don’t have to live with the results of their own actions. The decisions made every day will affect Katy, me, Amber, Jake, and Arille for THE REST OF OUR LIVES. So excuse me for not being more relaxed with regards to what is happening with my wife. Anyone who can’t understand that, should probably not be in health care. All the nice sentiments in the world won’t make me sleep any better if I have to make a rush, uninformed, decision, without the benefit of all the information possible, and the decision is a wrong one. I can live qwith whatever happens, so long as I am as informed as possible when making my decisions. We may find out more info later, and find that we were wrong, but we will have at least made the utmost effort to avoid those careless mistakes. Unfortunately, is appears that the “standard of care” has no regard for anything other than what they are used to doing. I will explore all my options, and I WILL NOT stop fighting to gain all pertinent information in a reasonable amount of time. Katy would want this, and Katy would do the same if it were me in the hospital.
Sorry for such an emotionally charged blog. The last 3 days have been emotionally trying, and the stress of these days has been compounded by a horrible deterioration of the attitude of the doctors. I hope and pray that next month we get a set of doctors capable of handling this better. If not, then I pray for anyone who has to enter the unit with a rare condition. I pray for their families, and the pain that they will go through if they have to deal with the “wall” when it comes to communication. I pray for them because most families don;t have the AMAZING support network that Katy and I have. If it weren’t for all of the wonderful people doing so much for us, I couldn’t be here fighting for Katy. Thank you all. As we get through this, know that we did, in great part, because of you.
Love to all,