Surprisingly there is no one else in the waiting room tonight. I’m starting to wonder if people write a blog about me, and the funny things I do when I sleep. There was a young lady in here for a short period of time that kept staring in our direction for an awkwardly long time, but she eventually left the party and went home. Our normal house guest are still visiting the waiting room regularly, but they have also graduated to bigger and better things and moved camp. The human alarm clock/ secretary is going to stay at his sisters house which brings to question why was he here this long if she lived so close anyways, but who am I to judge? Barb the wonderful lady with the incredibly loud snore is rooming in a guest house with another lady she has met in the waiting room. It has definitely developed into a little family here. Everyone ask about the other and what their loved ones progress is, we all have somewhat of a routine, we talk about the same topics, we laugh about things, it’s definitely made the experience better, it’s just a shame we’ve met under these circumstances.
Tonight I will be in and out of dads room making sure he’s not getting to rambunctious and trying to toss himself out of bed, or getting scratched up by flailing. I sense I may start to have empty nest syndrome since no one else is in the room, it’d be weird sleeping without the ridiculous background noise such as snoring, wolf calls, and Michael Jacksons distinctive yells.
Our luxury suite (normal hospital room) has been taken away because of the need for beds on that floor. We have since moved from the nice pediatric unit to the upstairs hospice unit and it definitely smells different! The pediatric unit, has nice buffed tiled floors with new equipment and a nice lcd tv. The hospice unit, not so much; my first thoughts when I walked into the unit were the thoughts of being in a funeral home. There are live flowers everywhere, and it kind of made me uncomfortable. The flowers appeared to be funeral/sympathy flowers, they definitely were not relationship flowers (I say that like I’d know, I’ve never gotten flowers FROM anyone). Courtney and Chris thought that the “old people” carpet that lined the hallways smelled of a nice clean lemon scent when in actuality I am pretty sure it smelled like urine (then again my chemoreceptor’s may not be as fully matured as theirs). I can’t even describe the odd smell inside the room either, but they did have a normal toilet height that I’m super excited about. I’ve always been a bit of a germ-a-phob so it’s kind of weird living in a hospital because I know how nasty the germs are. I was looking at the bed sheets on the bed as I was making it, and was sort of grossed out by the weird random stains on the sheets, but then the bigger part of me couldn’t be happier to have the option of sleeping in a “real” bed. My grandparents are sleeping at the hotel next door, and have offered one of the beds numerous times, but I just want to stay close, and how else am I suppose to get all of these amazing stories.
Fridday –
Last night was ridiculous, I had a workout like I’ve never had before. Dad was restless and moving the entire night. I had the task of staying up and making sure he wasn’t kicking off the bed or in a position to hurt himself. He could potentially pull out lines, get his arms or legs stuck, fall out of bed, or even break something with the movements he’s been doing. I basically had to lay on his legs to keep them down and it wasn’t an easy task. You’d think that someone who’s been laying in the bed for over 2 weeks would be pretty weak, but that’s not the case. After wrestling for 7 hours he decided to calm down for a little around 6 am and I decided I needed a nap. I was starting to get frustrated and cranky and it wasn’t a combination I really wanted to have. Frustration began to set in because I felt so helpless. I can’t calm him down, I can’t keep him still and I have no idea how to fix it. I don’t know why he’s moving so much and nothing seems to help and you just get to the point where you get upset when there is nothing you can do. You can’t fix it as hard as you try. I wish I knew that answers, I think knowing why or what was going on would help me cope.
As I laid down and napped for an hour I was woken up by a new family coming into the waiting room talking with their outside voices. They needed a lesson with using their inside voices, it didn’t help I was already cranky because of the lack of sleep. Added on to the loud talking at 7 there was someone who had phone with an incredibly loud obnoxious ring. The ring was the song the general lee would play on the dukes of hazard when the horn was honked.
I make my way back into the room and a new nurse is in assessing him. She begins to wake him up and move him around which I was worried about because we just got him to calm down (I think he just wore himself out). Janet was back again today (a new nurse who’s been orienting to work in ICU ) and we had someone else we haven’t had before. They talked me into going up to the room and getting some sleep around 11 in the morning, because they promised to sit in there and watch him. I was going to go earlier but I was waiting for the doctor to come around and get some word from them.
The first doctor to come in was the kidney doctor who is still pleased with the progress and had no new news to report. The second one was the heart doctor who reported the echo looked good and his EF is still 45-50% which she seemed very happy with. The last doctor I saw this morning was the neuro doctor. He confused me a lot and I think he had a lot of his words mixed up. He kept on talking about a lack of oxygen, but keep on using the wrong words to describe it. I knew what he was trying to say but he was using the wrong words to describe it (I even looked it up to make sure I was right). Basically what I understood from him is that there really isn’t a way to get a prognosis on the outcome because he’s still sedated heavily. He was saying that everything else needs to heal first and then the brain will recover.
An electroencephalogram (EEG) was done this morning to test the electrical activity of your brain. A ton of sensors are attached to your head and computer records your brain's electrical activity on the screen or on paper as wavy lines. This will help find out the activity of the brain and show it’s performing appropriately. I feel like I’m not as up to date as I have been in the past, I pretty much slept the rest of the day away and started to move around again at about 6 at night. I think this is what it’d feel like to work night shift, and I definitely don’t enjoy it. I’ll stick to my working in the afternoons and a few mornings. He’s starting to get restless again and is moving around the bed a ton, I’m guessing tonight is going be another night where I’m attempting to keep him up in a bed and trying to keep him still.
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