Dad was restless again last night, but it wasn’t near as bad as it has been in the past. I was in the room for awhile and he was resting, so I went out into the waiting room to get a little rest and “fresh air.” I would go back and check periodically until about 3 in the morning. At that time I told the nurses and respiratory therapist that I was going to lay down and rest for a bit, but if he started to get restless and squirming to please come and get me or call me. I was leery on the idea, but I felt confident enough that they would come get me if I was needed. Debbie one of the respiratory therapist is usually pretty good at letting me know how he’s doing and if I’m needed.
As I made my way into the room this morning Chris was in there with a very stressed looked on her face. She looked as if she had the same frustration I was experiencing the night before. We’re all having a tough time trying to find the right dose of sedation and trying to wean. No one is really totally sure on why he’s squirming as much as he is. The best idea we’ve had so far is because of hallucinations which is common with the fetanyl (pain/sedation drug). I’ve also heard the term drug induced encephalopathy but when I asked the neuro doctor about it yesterday he didn’t seem to think so, which is a good thing.
The results from the EEG still haven’t come back yet, and I’m assuming we won’t get results over the weekend so we’ll have to wait until Monday. I’m pleased with the cardiac doctor, she’s our favorite one we’ve dealt with so far, and she’s quite thorough and pays attention to the small details. She’s confident in Chris and myself when we bring up concerns or answer her questions. She noticed a rash we’ve been talking about and was concerned more than the other doctors. She explained that some antibiotics can cause fever and rash and we are 2 for 2 on those today. I mentioned something to her about the squirming and that we’ve noticed diminished movement and usage of his left arm over the past few days as well. She’s still pleased with his heart and how that’s doing so she’s not changing any medicine for his heart, but I’m confident she will follow up and consult the other doctors with the other areas of concern.
The Intensivist (who directs and provide care in the ICU) described that we need to start weaning his fetanyl drip and trying to get him out of the state he is in now. Chris is doing a ton of research and feels that they should change some of his meds to help calm him down and help with the withdrawal we’re facing. He’s been on these drugs for 20 days and they aren’t your average Dayquil. These will store in your tissues and stay in your system for 24-48 hrs. I think a lot of people are intimidated by Chris and the fact that she actual researches stuff and other alternative means. It seems to me that they don’t really listen or care what she has to say most of the time, and would rather stay on the track they are now because it’s “their plan.” I’d be 100% fine with that if you could tell me why you’d rather do something this way rather than another one that research shows has benefited. I know as people talk to me in therapy if they ask me a reason as to why I’m doing something different or not doing something, I have a reason for them. Either I’m focusing on something different, I’m not familiar with it, I haven’t seen it to be effective or I just haven’t thought about it. I’m going to tell them that, I just don’t want to brush it off as if I’m not listening.
I think the key word again today is frustration, we just don’t have answers on what to do. We have idea, and we know we aren’t doctors by any means, but we’re trying. Chris and I were talking that we feel most of the nurses who aren’t our normal ones have to draw straws and whoever loses has to work with us. They don’t want to deal with the talkative Gillenwaters who have questions and concerns about everything. It makes you think, if we weren’t here all the time or asking so many questions what would happen. How long would his femoral artery have bleed, would they have noticed the irregular heart rhythm that Chris did? Would he have fallen out of bed yet?
It makes you disappointed and sad when you’re a part of the healthcare field. You see things a little differently. It’s tough for us to take off our hats and be family rather than the healthcare worker. But what if we were just a family member with no idea what was going on? Would we be where we are today? Sometimes you feel like just a number and that after so many days it becomes a routine for everyone. Every patient is different and every patient will not have the same path to their goals and I think that’s hard for a lot of people to see. It seems as if we have a different doctor everyday and they don’t agree with each other on what they want. One will say they don’t want something, but then the other comes in and adds it. The continuity of care is tough; every physician has a different approach and no one seems to be on the same page. We want dad to get better and we know it isn’t going to happen overnight, and we’re willing to wait as long as it takes, but it just gets frustrating seeing everything that is going on and not having solutions to solve it.
Although dad is pretty sedated, he still has a sense of humor. I’ve been meaning to tell this story for awhile but I keep forgetting. Dad’s bowels have been making some pretty good sounds lately. As Denise and Janet (the dynamic nursing duo) were in the room Chris turns on the fan right as pops releases some methane gases in the direction of the nurses. Next thing we know Janet is holding her breath and running out of the room. Apparently it was pretty powerful. It made a rough day a little easier yesterday, it definitely made for a good laugh. Dad was finally able to calm down this morning around 12. They tried a few new drugs to work in conjunction with the old ones to help with the weaning process. He’s been pretty quiet most of the day but has had a few episodes of craziness. I’m confident with the activity he’s been doing; he’s going to be in better shape coming out of this than he is in. He’s probably going to be able to run a marathon. It’s humorous at times to look at him, because it’s a constant struggle to keep him up in bed. As soon as we boost him up so his feet don’t hang off, he squirms right back down to the bottom. His legs look like frog legs, and he’s definitely more flexible than I could ever imagine.
No comments:
Post a Comment