Well, looks like I'm going back to surgery tomorrow. :(
I have been having difficulty breathing since I had the new trach put in on Tuesday. The doctors just told me this was normal and that I just had to get used to the change in size in the trach. But going from an 8 to a 6 isn't that much of a difference and certainly shouldn't cause this much difficulty breathing. I just feel like my airway is restricted. But I'm new to all this and so maybe they are right and it's just I have to get used to it.
Then last night I coughed up a lot of blood with big clots. The problem is that one of the clots was so big that it wouldn't pass through the inner cannula and almost clogged the trach itself. My aunt was asleep and I nearly freaked out because I don't know how to suction myself yet and if it had gotten clogged, there would be nothing we could do except call 911 and hope they get here real fast because if the trach is clogged, I have no airway. Yeah, a little anxiety provoking. Thankfully I was able to cough it up after much work of trying to force as much air as possible out of my lungs to dislodge it and get it out. Pretty gross. Anyway, even so, I felt like something was obstructing my airway. With the previous trach when I felt like that it was something stuck in the inner cannula. I'd take the inner cannula out and clean it and everything was ok. But when I took out the inner cannula, not only was it not dirty, but it didn't help the feeling. I still felt like something was obstructing my airway. Well, thankfully the VNA came today. I had her show me how to suction myself, but when we went to put down the suction catheter, it would only go a little ways and then it wouldn't go any further. It was like it hit a wall or something was preventing it from being able to pass. I thought initially it was something I was doing wrong, but the nurse had the same problem, she couldn't suction me. It certainly wouldn't go down far enough to suction - no cough reflex or anything. So she called the doctor because apparently this isn't normal and maybe the reason I feel like I can't breathe and that something is obstructing my airway is not because I'm crazy or that it is anxiety, but I truly have something obstructing my airway. One idea is that it may be inflammation. The fear with this is that if we don't get it under control, it could obstruct my entire airway and that would be very bad... The nurse also told him about the amount of blood I'm still coughing up. Apparently this is also not normal, which is what I was told by the ER doctor.
So off to surgery we go again tomorrow. They will put me under like they did on Tuesday and he will go down and take a looksy to see what's going on down there and what is causing both the bleeding and the obstruction. Need to make sure I can be suctioned. That is very important as this is my airway. And for the second time in 3 days I'm NPO after midnight. The problem isn't regarding food. It's not like I'll waste away to nothingness by not eating, but not drinking sucks. I get so thirsty. Why is it that the words NPO make you hungry. You could be so sick and not want to eat at all; as soon as they say the words NPO, you are starving and want to eat.
I'm not too keen on the having to go back under anesthesia again since my last reaction was so stellar and though I can't see why it would cause any pain as they aren't cutting or suturing this time, I can probably expect, knowing me, to be in pain when I wake up. I mean last time they weren't cutting either, just putting in some sutures to make sure the excess hole closed properly, and I woke up in massive amounts of pain. If there is inflammation, don't know what he'll have to do other than give me meds to decrease it. If there is bleeding, guess he might have to cauterize something. Good thing my surgeon is a thoracic and trauma surgeon as well. He told me this kind of jokingly when I first met him to put in the trach. He went down the list of possible complications and then said, but good thing if anything on this list happens I am a thoracic surgeon as well, so I can fix it. lol. I laughed, never thought I might actually need that and be glad he was. Not saying that I will. I'm not trying to over dramatize things. But just in case he needs to fix a bleed, he can do it. That makes me feel somewhat better. Though Rockville is not exactly the hospital to be having major surgery, but I guess you don't always plan these things.
I've been considering once the trach is in place and we are over these hurdles to switch my care to one of the bigger hospitals - probably Hartford Hospital, but I can't exactly switch surgeons and care when all these things are happening. I need to stick to the same surgeon. And though it would have been best to have the initial surgery at Hartford Hospital, when they tell you you need a trach, you don't exactly say ok, but you need to transfer me to a different hospital first where I feel they are more equipped to deal with emergencies. It is a pretty emergent procedure and you want to be where your doctors are and they are on staff at the hospital so that if something happens you are being treated by them. Unfortunately that means Rockville or Manchester, and I will not go to Manchester unless I have a death wish.
The major frustration with all of this is why don't doctors ever listen to the patient. I said I felt like I couldn't breathe. Told them I didn't feel the amount of bleeding was normal. But I was told this was just anxiety. I didn't really know what I was talking about. I mean, it's just my airway and my breathing. Obviously the doctors know more than me regarding my breathing and what feels right and what doesn't. I've only been living in this body for 28+ years. But having the initials M.D. after their name must make them experts on all bodies and what is normal and not. It's a rare complication so obviously I can't be having it. I just have a rare immune disorder and we're doing this procedure in hopes of treating another rare disorder and this procedure for this cause has only been done 3 times world wide, but I can't be having any type of rare complications. I tell you, I should play lotto. Then the VNA nurse tells them what's going on and all of a sudden I'm not quite so crazy anymore and maybe, just maybe, I should be taken seriously. As I said, it's only my body, but I don't know anything about it.
I have been having difficulty breathing since I had the new trach put in on Tuesday. The doctors just told me this was normal and that I just had to get used to the change in size in the trach. But going from an 8 to a 6 isn't that much of a difference and certainly shouldn't cause this much difficulty breathing. I just feel like my airway is restricted. But I'm new to all this and so maybe they are right and it's just I have to get used to it.
Then last night I coughed up a lot of blood with big clots. The problem is that one of the clots was so big that it wouldn't pass through the inner cannula and almost clogged the trach itself. My aunt was asleep and I nearly freaked out because I don't know how to suction myself yet and if it had gotten clogged, there would be nothing we could do except call 911 and hope they get here real fast because if the trach is clogged, I have no airway. Yeah, a little anxiety provoking. Thankfully I was able to cough it up after much work of trying to force as much air as possible out of my lungs to dislodge it and get it out. Pretty gross. Anyway, even so, I felt like something was obstructing my airway. With the previous trach when I felt like that it was something stuck in the inner cannula. I'd take the inner cannula out and clean it and everything was ok. But when I took out the inner cannula, not only was it not dirty, but it didn't help the feeling. I still felt like something was obstructing my airway. Well, thankfully the VNA came today. I had her show me how to suction myself, but when we went to put down the suction catheter, it would only go a little ways and then it wouldn't go any further. It was like it hit a wall or something was preventing it from being able to pass. I thought initially it was something I was doing wrong, but the nurse had the same problem, she couldn't suction me. It certainly wouldn't go down far enough to suction - no cough reflex or anything. So she called the doctor because apparently this isn't normal and maybe the reason I feel like I can't breathe and that something is obstructing my airway is not because I'm crazy or that it is anxiety, but I truly have something obstructing my airway. One idea is that it may be inflammation. The fear with this is that if we don't get it under control, it could obstruct my entire airway and that would be very bad... The nurse also told him about the amount of blood I'm still coughing up. Apparently this is also not normal, which is what I was told by the ER doctor.
So off to surgery we go again tomorrow. They will put me under like they did on Tuesday and he will go down and take a looksy to see what's going on down there and what is causing both the bleeding and the obstruction. Need to make sure I can be suctioned. That is very important as this is my airway. And for the second time in 3 days I'm NPO after midnight. The problem isn't regarding food. It's not like I'll waste away to nothingness by not eating, but not drinking sucks. I get so thirsty. Why is it that the words NPO make you hungry. You could be so sick and not want to eat at all; as soon as they say the words NPO, you are starving and want to eat.
I'm not too keen on the having to go back under anesthesia again since my last reaction was so stellar and though I can't see why it would cause any pain as they aren't cutting or suturing this time, I can probably expect, knowing me, to be in pain when I wake up. I mean last time they weren't cutting either, just putting in some sutures to make sure the excess hole closed properly, and I woke up in massive amounts of pain. If there is inflammation, don't know what he'll have to do other than give me meds to decrease it. If there is bleeding, guess he might have to cauterize something. Good thing my surgeon is a thoracic and trauma surgeon as well. He told me this kind of jokingly when I first met him to put in the trach. He went down the list of possible complications and then said, but good thing if anything on this list happens I am a thoracic surgeon as well, so I can fix it. lol. I laughed, never thought I might actually need that and be glad he was. Not saying that I will. I'm not trying to over dramatize things. But just in case he needs to fix a bleed, he can do it. That makes me feel somewhat better. Though Rockville is not exactly the hospital to be having major surgery, but I guess you don't always plan these things.
I've been considering once the trach is in place and we are over these hurdles to switch my care to one of the bigger hospitals - probably Hartford Hospital, but I can't exactly switch surgeons and care when all these things are happening. I need to stick to the same surgeon. And though it would have been best to have the initial surgery at Hartford Hospital, when they tell you you need a trach, you don't exactly say ok, but you need to transfer me to a different hospital first where I feel they are more equipped to deal with emergencies. It is a pretty emergent procedure and you want to be where your doctors are and they are on staff at the hospital so that if something happens you are being treated by them. Unfortunately that means Rockville or Manchester, and I will not go to Manchester unless I have a death wish.
The major frustration with all of this is why don't doctors ever listen to the patient. I said I felt like I couldn't breathe. Told them I didn't feel the amount of bleeding was normal. But I was told this was just anxiety. I didn't really know what I was talking about. I mean, it's just my airway and my breathing. Obviously the doctors know more than me regarding my breathing and what feels right and what doesn't. I've only been living in this body for 28+ years. But having the initials M.D. after their name must make them experts on all bodies and what is normal and not. It's a rare complication so obviously I can't be having it. I just have a rare immune disorder and we're doing this procedure in hopes of treating another rare disorder and this procedure for this cause has only been done 3 times world wide, but I can't be having any type of rare complications. I tell you, I should play lotto. Then the VNA nurse tells them what's going on and all of a sudden I'm not quite so crazy anymore and maybe, just maybe, I should be taken seriously. As I said, it's only my body, but I don't know anything about it.
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