The first thing that comes to mind as I start today’s installment of “Man vs. Hospital” (thank you Sheri) is “O what a night.” Throughout the day it was fairly calm, and the nursing staff was great. We were excited to hear that Mr. Clean was back to be our night nurse, because he’s been great and we’re confident and trust him. However, last night made us worry a little. As you can tell we ask lots of questions, not overly annoying petty questions, but ones that concern us or from stuff we want to learn more about. Anyways, I wasn’t back at the time and Chris had noticed some levels on his vent had changed that we’ve been having issues with in the past. As Chris was questioning why they had changed, and as dad was restless and squirming the nurse sternly tells her “We aren’t going to do this tonight, They’ve answered your questions all day, and we’re taking good care of him.” Surprised, Chris asked what he’s talking about, she’s been sleeping all day and thought everything was kosher (apparently not). She leaves and calls a friend to run things by and tries to calm down. One of the night supervisors then comes by and is hearing her account of the story. Meanwhile I’m in the room sitting with dad and the nurse asked if Chris is returning because he wants to apologize for losing his cool.
Chris eventually comes back in with her crew and we talk things and options over. The nurse then comes in and sincerely apologizes. You can tell he was upset about the way he acted and told Chris he was just stressed and it came out. We’re nervous that the staff doesn’t like to come into the room and see it as burden to take care of dad, because we do question things and we want to know what is going on with his care. I think it’s hard that we are fairly familiar with medical terminology, but we have no idea anything about ICU. I feel bad for families that don’t ask or don’t know anything. There is a lady we’ve met in the waiting room whose husband had a stroke and was making gains (from my understanding of how she described it) and they recently just told her, there is nothing more they could do so he’s now going up to hospice. They told her this would be the best quality of life he would have and it wouldn’t get any better. This did not set easy with me. She’s content at this point, and I don’t want to raise concern with her, because I’ve never seen him or looked at his progress, but they didn’t even attempt to take the vent off and put him on a trach.
I know I’ve been pretty frustrated over the past few days, and it’s building. The first EEG they did last week was lost and they did another one this morning. We’ve had meetings pretty much all morning to talk about our frustrations and concerns. It seems all good, we’ve been happy with the care and trusted the doctors we’ve had, we just want explanations as to why things are or aren’t being done. After our issues recently, I know the nursing staff has been talked to and now I feel they are going to try to be overly nice and kiss up which is not what I want at all. I don’t want people to fear coming into the room just because they know we’re going to bring up questions. We’ve been here for over 3 weeks straight and have had at least 15 different nurses. It’s hard for them to see the changes like we’re able to notice. If you watch something for 3 weeks you’re bound to learn more about it than you are if you are in and out every week.
I’m not one to enjoy confrontation so I’m always sitting on my hands and holding back. I don’t like to say things or complain about things (I know you don’t believe it). Chris on the other hand isn’t afraid of anything. It makes me think of the older ladies under 5 ft who aren’t afraid of anything or anybody. Chris kind of reminds me of one those ladies. She’s not afraid to voice her opinion or mention anything. It scares me at times, but I think it’s been a good thing. She may come across as if she’s mad at you or more stern than you’d like, but she just wants the best for my dad. I think it’s a blessing and curse that she works at this hospital. She knows a lot about the way things are run, she has a lot of connections because she’s been doing this for 80 years, but then how familiar is too familiar. She’s big on researching, which is never a bad thing, but I think her tiny 5’2” frame and her voiced opinions is highly intimidating to many, including doctors.
Dad has been restless most of day. He tried a couple different medicines this weekend that seemed to work pretty well, but he’s no longer on those. The reasoning I received from a nurse was because it can affect part of the heart rhythm, so they don’t want to keep giving it. I’m not sure how true it is, but it’s all I have. They have him on the same meds he’s been on for the past week so I’m expecting him to still be quite restless. The kidney doctor who still comes around reported that he had positive cultures in his blood which could mean he is septic. Sepsis is caused by the body fighting a severe infection that has spread via the bloodstream. It could result in a low blood pressure leading to poor circulation and lack of perfusion of vital tissues and organs. They ordered more blood samples to test for this and I haven’t heard anything back yet. The EEG results were lost so they had to do another one this morning. I’ve heard it can take 3-5 days to get the results again.
Unfortunately we just got word that Barb’s, my waiting room friend who I asked everyone to pray for last week, husband died. He was the one who they transferred to hospice because there was nothing else they could do. She came down stairs to tell us, and she seemed to be coping fairly well with it. I feel terrible for her, and I wish there was something that I could have done for her, but it’s a fine line having her seek other opinions or agreeing with their call without ever hearing the information from the source. I can’t imagine being in that situation and struggle with the decision she had to.
Dad has opened his eyes more today than I have seen in a while. He still hasn’t been focusing and isn’t looking in the direction we’re talking. We were able to relax him a little today but only for short periods of time in the morning. This afternoon I haven’t been able to settle him down at all, I think I’m losing the touch. I feel bad the last few updates have been more about frustration than anything. I think that weeks in the hospital can do it to you. Through all of this stuff we’ve been through, we’ve definitely seen/been on the other side of healthcare. It’s going to make me think much more about my communication with patients and family members. Hopefully tonight will be peaceful for him. He still has an allergic reaction to some medicine, but it does look slightly better. Overall it seems as if we’re still at the same point we were this time last week with really no changes.
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