Trach Surgery. Time to throw away the plan...

Tuesday I had surgery to put in a smaller trach. Well, I had a lot of problems with bleeding and something that was obstructing my airway, so the doctor decided the best thing would be to do a bronchoscopy, to take a look and see what was going. on. For this, the plan was to put me to sleep, do the procedure, and fix whatever was going on. I was quite nervous as waking up from the previous surgery was a less than stellar experience. After surgery, according to the plan, I would go to the PACU and after I woke up, I'd go home. Things didn't go exactly as planned. Instead of waking in the PACU as was planned, I woke up in the ICU. I don't honestly know what went on, but my doctor decided that he wanted me to stay in the hospital for observation. I guess he did a lot of manipulation of the trach while in surgery. There was also a lot of bleeding. He cauterized the blood vessels that were bleeding, however, he said it doesn't seem like I heal properly. Every time he went to cauterize the blood vessel, if he then touched it, it would start bleeding again. He is not exactly sure why this is occurring, but this is what is causing the bleeding and preventing the site from healing properly. He thinks it may be because of the prednisone, but I don't believe this theory. I doubt it for a few reasons: one, I've been on long-term prednisone before and not had this type of effects; two, I'm on only 10mg of prednisne, which isn't a really high dose; three, I had this bleeding problem before I started the prednisone. Before surgery he had me go for blood work. He tested my  PTT, which tests the time it takes for your blood to clot, hemoglobin, and hematorcrit. Interestingly, my PTT was normal. My hemoglobin and hematocrit were low. Having my hemoglobin and hematocrit to be low, was not surprising since I have been bleeding for over 3 weeks; however it was surprising to have my PTT to be normal; it would be expected that all this bleeding would be because my blood was not clotting. If this were true, my PTT would be low. The doctor also said that the obstruction was caused by severe inflammation.

With all the bleeding and everything else that occurred, he wanted to keep me overnight where I could be closely monitored and observed. I had a LOT of pain, more than the original trach surgery, which wasn't expected since no incisions had been made. The doctor explained that this was due to the fact that he did a lot of manipulation. I also wasn't able to swallow because of all the swelling. The first day was extremely hard because I was in such extreme pain and quite out of it. Today the pain was manageable and I was able to eat normally. I had a lot of bleeding the first day, he had used a special type of gauze around the trach site, which causes blood to clot. It seems to be helping since I am not coughing up as much blood, and when I clean the trach there is less blood in it.

The original plan was to stay over the weekend and be discharged today (Monday), but as I said before plans often get thrown out the window. I mentioned to the nurse that we were trying to get me into rehab, but had not been successful because of insurance. The discharge coordinator said that she didn't see a problem. I will be going to Fox Hill, a rehab facility, either tomorrow or Wednesday, depending on when they have a bed. I will get my IVIg tomorrow. I am somewhat hopeful, but I'll believe it when I see it. We'll see...

Back to surgery we go....

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.

Trach Surgery

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.

Things are Never Easy

I was discharged from the hospital a week after having the trach placed. So I was discharged on last Thursday. Since then, life has been a collasal horrible disaster. They basically discharged me without any proper discharge plan. They were supposed to downsize the trach to a 6 so that I could use the passy meir valve and talk. Remember this was supposed to make the quality of my life better. Well, the surgeon decided that the trach was too new and he did not want to downsize the trach for another week. Well we will skip ahead in time to today when we called and guess what.... the doctor is on vacation this week. So is my trach going to be downsized so that I can use the passy meir valve this week? That would be a giant no because the doctor is on vacation. Can I scream? Oh wait, I have no voice! I can't even do that. And while I was told that this was a simple office procedure, guess what I find out. It is day surgery at the very least. They will bring me in, change the trach and it may be a few hours or I may need to stay over. Let's count on me needing to stay over because that is how my life is. And honestly I just want to be sure I can use the passy meir valve and talk. Because this not being able to communicate sucks and is just not fair. Just sayin'

So back to the story. The company that previously handled all my o2 needs does not do trach care or anything with trachs. Ok, understandable. Trachs take special consideration and are more complicated than plain just o2 needs. So one would think before being discharged from the hospital they would set me up with the o2 needs and humidification that I need with a trach. Also, one would think they would provide me with what I need for trach care. For those who don't know about trachs, they obviously have to be cleaned and taken care of. Well, none of this was taken care of. I was sent home without any humidification for my o2. This caused me to get very dry and that caused other problems. Also, I was sent home with 2 trach cleaning care kits when discharged. Since PromptCare, my previous o2 company could not provide my needs, it was set up that Apria would take over. Well Apria never got the proper authorization, scripts with specific o2 needs, ect. and so they never set things up. Anyway.... VNA came out Friday and were appalled that I basically had nothing - o2 wasn't set up and had no trach care kits. It was also determined that I should've been sent to rehab not directly home since I have not learned how to live with a trach, nor care for myself with a trach, and after having the trach put in, I'm sufficiently weak and really can't do much. So, yes, I need rehab. We were told to go back to the hospital and they would admit me and arrange for rehab. Well I never actually made it into the ER. I sat in the waiting room for several hours while the charge nurse made some phone calls and tried to arrange for the o2 needs with Apria. We all know that it is near impossible to be admitted for rehab on a Friday afternoon at 2pm. So we were assured that Apria was going to come and by 7pm when they hadn't, we were back on the phone trying to get the humidification I needed to get through the weekend, since nothing was going to be done until Monday. In the end, we went to the ER and picked up some humidification bottles to attach to the liquid tanks. We rolled one liquid tank into my room and attached the humidification bottle attached to the trach mask. This gives me the ability to move about a foot and a half. Basically I'm stuck in my room. So much for making my life more mobile.

On to Saturday. The VNA nurse comes again. At this point I have used all the trach care kits given to me because my trach keeps getting clogged with huge blood clots that require me to take the trach tube out and clean it because I can't breath through these clots. The nurse calls the dr that put it in (yes the doctor that is currently on vacation) and he says to go to the ER. So off to the ER we go. Also decide to mention to the ER that despite 80mg of lasix my feet are so swollen with severe edema that I can't walk and nothing fits on my feet. Oh, but does the ER want to do anything? nope. They give us a few more supplies and tell us that after talking to Dr. Constantino (the dr that sent us to the ER) that coughing up blood is normal for a new trach. (then whey did he send us to the ER?) They did do a chest xray and that is all fine. So we left with one more trach kit, some ampules of saline to squirt in my trach, and a few more supplies  to get through the weekend. Apria still has not come with o2 or supplies.

So we get through Sunday. I sleep and watch tv because there isn't much else I can do. It is now Monday. We try to get me into rehab. The VNA and my pcp are trying to work together. There is a rehab facility in town that does pulmonary rehab that would be perfect. Guess what? Medicaid won't cover skilled nursing care. haha. Life is such a collasal joke. I can't get into rehab because it isn't covered by insurance. Did I mention that Apria still hasn't come. The pulmonologist is supposed to be signing and faxing over orders so they can deliver what I need, but yet it still hasn't been done. We have been making phone calls all day. My pcp's suggestion was to go back to the ER, to which we siad no because they aren't even going to treat me but rather they will just send me home again, so what is the point of sitting there for hours. Now it is 4 o'clock and despite countless calls made by my mom and VNA since I have no voice, still no change. VNA is trying to get the pulmo to direct admit me and finally do the job they should've done originally. Yes, some of my doctors suck. Some of them are great and are trying their best to move mountains and get things done. My VNA nurse is an angel and really couldn't do more than she is.