Infection

I have my first infection since getting the trach and it's really difficult. At first everyone wanted to know how I knew that I had an infection. Trust me... I know my own body. But more than that, my trach has changed. It is disgusting. Really thick, yellow mucous, and it stinks - smells like dirty washcloth meets dirty socks. Or maybe a better way to describe it is that it smells like Abby after she's been swimming. Very musty and gross. Now I can't really smell. So for me to smell, means that it is quite bad. Right now, I'm cleaning the trach every few hours. It just gets so thick and mucousy that I have to clean it. I'm also having to suction and I never did before. Also, I've been really short of breath. Sometimes too short of breath to wear the pmv to talk. It's definitely a difference from trach care when I was in rehab. When I would do trach care, it was slightly mucousy, but not overly so, and it certainly didn't smell. This normal and to be expected; nothing like it is now. Besides, I know... just as I knew before the trach, I know now. In fact, I think it is more obvious now because I see it when I clean it. I notice a change. Since the trach comes directly from my lungs, there is no question that that is where the infection lies. While it's good to be able to prove it, to be able to do a sputum culture, it's also harder because it's so "in your face." There's certainly no denying or ignoring it. The hard part about this is though I knew that I'd still get an infection at some point, I hadn't had one in a while, and maybe part of me hoped that maybe I wouldn't get an infection, that the trach had solved all of that. I guess, I also on some level, feel that getting an infection is my fault. I'm the one that cleans it. Yet, I guess I know this isn't true, that it's not my fault, an infection was inevitable, especially since having a trach makes you more susceptible to infection. I do clean it, and am responsible for it, but I take excellent care of it. Just like I take excellent care of my port. When I was in rehab, they'd train the other nurses or have other nurses come and watch me clean it because I did such a good job with it. Just as getting an infection before the trach wasn't my fault, and something I had no control over, neither is this my fault. Still, it is hard.

So Monday, I called the pulmonologist's office to get an appointment, but was told there were no appointments this week. Well first of all, there has to be appointments. There may not be any regular appointments, but there were emergency appointments. There has to be. They have to have sick patient appointments. But instead of arguing, I just asked them to have someone call me back. It wasn't an emergency and I didn't need to be seen. All I really needed was for them to order a sputum culture. I knew they couldn't put me on anything until they had a culture done anyways. Then I called Dr. Constantino's office to see if I could make better headway there. Turns out he's on vacation, and won't be back until next week. Great... Just great... Now I know he isn't really on vacation. He can't; he is the only trach doctor in the hospital. If a patient needs a trach, he has to do it. If a patient has an emergency, he has to be there. There isn't anybody else, and he doesn't have another doctor, nurse practitioner, or PA he works with. When I asked the receptionist what I should do, she told me I had to either see my pcp, or go to the ER. Well the ER would do me no good. The doctors there don't know anything about trachs. They are completely incompetent. The past times since I've gotten the trach that I was in the ER, both times for problems with the trach, they did absolutely nothing. When I had bleeding from the trach I was told that this was normal. When I had difficulty breathing, I was told that I just needed to get used to it. In fact, it turned out that the blood I was coughing up was from my lungs and vessels in my lungs had to be cauterized. The shortness of breath was caused by inflammation, which had caused an obstruction. So I don't have much hope that they'd be of help this time either. Besides, I just spent nearly 3 months in the hospital, I most certainly do not want to go back. Next, I tried Dr. Lafrenier's office because most other trach patients see an ENT to manage their trach. He is my ENT and it would be good to have him as back up in case this happens again, especially since this is the second time Dr. Constantino has been on vacation. However, I struck out here as well. Dr. Lefrenier was also on vacation and wouldn't see me in regards to the trach anyway because he hadn't put it in, which is a load of BS, but nothing I can do until he's in the office anyway. Thankfully, Diane, the PA in Dr. Wasserstein's office called me back and ordered the sputum culture. A sputum culture with a trach is much easier than when you have to just cough it up. My problem in the past had been that I'd be bringing up tons of mucous, but soon as they'd say "sputum culture" all sputum production would cease. At least this way, I had easy access. I had what was on my inner cannula, and if that wasn't enough, I could suction. Having never done a sputum culture before, however, made me nervous. In my opinion, it would have been ideal for me to either go into the office so that someone there could collect the sample or have VNA do it; then I know it'd be done right, and I wouldn't have to worry about somehow not doing it right. But to be honest, the doctor probably didn't know how, and VNA couldn't. So it was up to me. My biggest worry is that I wouldn't have enough for them to culture. Of course when I thought about it, if that happened, I'd just repeat it. It's not like I would be lacking in sputum or that I wouldn't be able to obtain any more. Basically what I did was get the sputum from around and inside inner cannula with a q-tip swab from the trach cleaning kit. I also swabbed inside trach and even coughed into cup. Looked like plenty to me. In the meantime, while waiting for sputum results, I was put on doxycycline and ceftin in case of infection. As I said, there was little doubt that I had an infection. Part of me wanted to put a warning saying "Caution! Do not inhale or sniff." Just unscrewing the lid would knock someone out with the stench alone. Oh, it was disgusting, nauseating. Another reason I knew it had to be an infection was that I had eliminated any other cause. I had completely changed all my equipment and tubing. Anything that couldn't be completely changed was boiled to disinfect. I thought of changing the inner cannula. I have two extra trachs and using the inner cannula from one would be okay, but if it was an infection causing the stench, changing the inner cannula wouldn't help. All that it would do is make the new inner cannula gross too. Some people on the trach board suggest doing a complete trach change, but I've never been taught how to do this. When I saw Dr. Constantino, I asked how often he changes trachs because the box said it should be changed once a month. He said he changes them every six months. Though at most it is an office procedure, many moms and other patients change their or their children's themselves. He said he prefers to do them in surgery at the hospital especially after all the bleeding issues I had, he wants to make sure at least the first time it is changed that he is at the hospital where if something does go wrong or I have a lot of bleeding, he can fix it. Though changing the trach doesn't seem too terribly difficult, it is not something that I just want to do myself without having been taught or shown how to do it.

Finally the results came back. As expected, it did grow bacteria. Honestly, had they said it was negative, I would've had them do another. All I had to do would was take out my trach to show them - the look and smell alone made it obvious that there was an infection. When I called the doctor to get the results, she said she was going to call in an order for ceftin. I get really frustrated by doctors. They write orders to treat you without having looked at your chart first. I'd been on ceftin for 5 days. At the time of the culture, I had been on it for 3. Obviously, this strain of bacteria was resistant because if it was going to work, it would have already begun to do so. In addition, she had been the one to call in the antibiotics previously; she should've known I was already on cefin. I then told her how oral antibiotics weren't effective because I didn't absorb them properly, and IV antibiotics are best. Since I have a port, there is no reason to not get them at home. No reason to have me get so sick that I need to be hospitalized. It is better to be proactive, start the IV antibiotics, and prevent a hospitalization, especially since I am more at risk of getting an inflection in the hospital. With the trach, my lungs are more stable. Thankfully she agreed.

Though I love Kathy, my nurse, she can be quite frustrating. She has strong opinions, some of which I don't agree with. She had screwed up the IV Benedryl and my chance of using it because of her belief that it could cause a potential side effect in the possible future. When I told her about the IV antibiotics, she was not supportive and in fact she suggested they do a second culture because mine may have been contaminated. Her argument was that it should've been done at the doctors office or by the VNA. Personally, I was insulted by this. Originally, I had wanted the doctor's office or VNA to collect the sample, but neither would do it. The only reason I wanted them to do it was that I had never done it before, and they had more experience. But because they wouldn't do it, I had to. I was a biology major and had worked with cell culture before. Plus, it's not exactly rocket science. I swabbed the inner cannula both outside and in. I swabbed inside the trach, using sterile technique, and coughed into the cup. Everything I had was clean and sterile, so there was no chance of contamination. Anything that was cultured was from my own body. If a doctor or nurse had done it, there would be the chance that they could contaminate it with their own germs, by breathing on it. So I was kind of insulted to have her suggest that I had not done it right. Had a second culture needed to be done, it would have postponed treatment. By the time it had been done, sent to the lab, and results obtained, it would've been Monday, and I would've been sick for over a week. In my opinion, prompt treatment was important and the sooner I got on the IV antibiotics, the better. I was really trying to avoid the hospital. Thankfully, she didn't call my doctor. My doctor was able to get it set up through my oxygen company. This was best because they were able to get it to me that night, whereas had they used BioRx, though I love them and am happy with the IVIg, I wouldn't have been able to start until it had been mailed to me. I am proud of myself for advocating for my care and getting what I needed. I am very glad I did because my lungs have gotten worse. I am short of breath and not really able to use the pmv. In addition, I began running a fever. So while Kathy can question whether I had an infection, it was obvious I did. I know my body, and a change in my trach indicates an infection. I know when I have an infection and when I do not. It's more obvious with a trach because the mucous coming up is directly from my lungs. So any indication of an infection is from your lungs. The frustrating part is that I've only been home two weeks and already have an infection. I didn't when I was in rehab. One of the tenets is coughing a lot, so I am concerned I got it from him, but who knows. Just hope this won't be a trend. I know I'm at greater risk since I now have the trach and because I'm in contact with many more people and all the potential germs they carry. In rehab I was fairly secluded and protected. But I can't exactly live in an institution.