Tuesday I went in to have my trach downsized from an 8 to a 6. Supposed to be a simple thing, but I'm a true zebra and whatever is supposed to be simple is not. First of all, I now understand HoJo's anxiety when she had her bone marrow biopsy and she couldn't have her passy meir valve. With me since I can't yet use the passy meir valve, I have a writing board and pen. You write on the board (kind of like etch-a-scetch) and press a button and it erases it. Anyway this is my only means of communicating currently. I obviously couldn't have this in surgery and this made me very nervous because I had no way of communicating with anyone at all. At one time, just before they put me out, they had the trach mask on but it wasn't on right or something was blocking the trach, or something, but I couldn't breathe right. Well the problem was my arms and hands were all wrapped in for surgery so I didn't fall off the table and so I couldn't adjust it myself, and I couldn't get the nurses' attention or the anesthesiologist. I started freaking out and finally they figured out what was up and fixed it, but for a moment it was quite scary.
I never deal with anesthesia well, not even since birth. My first surgery was at 7 months. They gave me anesthesia then and they give it to me now and it never fails, I wake up crying every time. After the initial trach surgery I was extremely disoriented. I didn't know that surgery was over or had even begun. I was on the vent and because I was so disoriented I fought the machine terribly. I finally calmed down once I figured out where I was and what was going on. This time I asked the nurses to make sure they told me where I was and that surgery was over so that I wouldn't be disoriented after. This helped. But I was told that there wouldn't be any pain. Well I knew this meant I would have some pain, but nothing is pain free and doctors don't know what they are talking about. But oh, my God, I was in extreme pain. 2mg dilaudid, didn't touch it. Finally after another 2mg it was starting to be under control. He had to use a lot of stitches because apparently there was a lot of bleeding. So that is one source of pain. I also had a lot of swelling and so initially couldn't swallow even water. They gave me sips of water and I ended up choking. I also woke up with horrible coughing. I kept coughing and coughing, these horrible whole body coughs where you can't catch your breath at the end. You feel like you're coughing your insides out. This of course hurt like hell and I was coughing up massive amounts of blood - totally not cool. Every breath I took, I ended up having the horrible coughing fits. The only thing to avoid them was to not breathe, and that wasn't exactly a legitimate option. So, yeah, after surgery was not fun.
I had so much difficulty with my breathing and it was getting to be 5 o'clock, when the nurses want to go home. Supposedly they had no way to directly admit me so they sent me to the ER. Well the ER was packed, but thankfully I got right in, being a day surgery patient and all and having difficulty breathing. But once in the room, that was a different story. I had the same doctor I had last week when I had to go in with the bleeding. He is a real asshole. Thinks he knows everything, but in truth knows nothing. He's new and honestly that just makes everything worse. They didn't even call my pulmonologist. Gave me some pain medication and some ativan and that's it. Didn't listen to my breathing. Didn't pay attention to the fact that my sats were bouncing from 79% to 90%. Yes, the 90% is ok, but the 79% not so much. We found out I had a fever before surgery of 100.8. This is extremely high for me because 1) my normal temp is 96.5 2) I never run a fever even when sick, so if I do, it's quite alarming. Based on this, we knew something was amiss. After surgery my temp had gone up to 101.6. Definitely not good. The doctor didn't even draw blood. He did do a chest xray, which came back clean, but then a chest xray is only going to show pneumonia, not much else. He determined that this was just anxiety and I just should go home. So home I went. I didn't actually get home until midnight. It was a long day and they never resolved my difficulty breathing.
I never deal with anesthesia well, not even since birth. My first surgery was at 7 months. They gave me anesthesia then and they give it to me now and it never fails, I wake up crying every time. After the initial trach surgery I was extremely disoriented. I didn't know that surgery was over or had even begun. I was on the vent and because I was so disoriented I fought the machine terribly. I finally calmed down once I figured out where I was and what was going on. This time I asked the nurses to make sure they told me where I was and that surgery was over so that I wouldn't be disoriented after. This helped. But I was told that there wouldn't be any pain. Well I knew this meant I would have some pain, but nothing is pain free and doctors don't know what they are talking about. But oh, my God, I was in extreme pain. 2mg dilaudid, didn't touch it. Finally after another 2mg it was starting to be under control. He had to use a lot of stitches because apparently there was a lot of bleeding. So that is one source of pain. I also had a lot of swelling and so initially couldn't swallow even water. They gave me sips of water and I ended up choking. I also woke up with horrible coughing. I kept coughing and coughing, these horrible whole body coughs where you can't catch your breath at the end. You feel like you're coughing your insides out. This of course hurt like hell and I was coughing up massive amounts of blood - totally not cool. Every breath I took, I ended up having the horrible coughing fits. The only thing to avoid them was to not breathe, and that wasn't exactly a legitimate option. So, yeah, after surgery was not fun.
I had so much difficulty with my breathing and it was getting to be 5 o'clock, when the nurses want to go home. Supposedly they had no way to directly admit me so they sent me to the ER. Well the ER was packed, but thankfully I got right in, being a day surgery patient and all and having difficulty breathing. But once in the room, that was a different story. I had the same doctor I had last week when I had to go in with the bleeding. He is a real asshole. Thinks he knows everything, but in truth knows nothing. He's new and honestly that just makes everything worse. They didn't even call my pulmonologist. Gave me some pain medication and some ativan and that's it. Didn't listen to my breathing. Didn't pay attention to the fact that my sats were bouncing from 79% to 90%. Yes, the 90% is ok, but the 79% not so much. We found out I had a fever before surgery of 100.8. This is extremely high for me because 1) my normal temp is 96.5 2) I never run a fever even when sick, so if I do, it's quite alarming. Based on this, we knew something was amiss. After surgery my temp had gone up to 101.6. Definitely not good. The doctor didn't even draw blood. He did do a chest xray, which came back clean, but then a chest xray is only going to show pneumonia, not much else. He determined that this was just anxiety and I just should go home. So home I went. I didn't actually get home until midnight. It was a long day and they never resolved my difficulty breathing.
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