So here's the latest in chronological order.
Monday night was my last flagyl dose for the c-diff. I was feeling o.k. until Wednesday morning when the diarrhea started again. That was the worst day for it to happen because I had to go to Princeton for a meeting at 10 o'clock. I stole a dose of Jim's flagyl and was able to make it, but felt terrible. At noon I called Dr. Kozuch's office and left a message for her nurse. She didn't call me back. I thought, well- maybe she's off on Wednesday so I'll wait until Thursday. I just continued to take the flagyl three times a day to keep the c-diff at bay. Leaving the house to go anywhere is the scariest thing for me now, so I keep flagyl in my purse.
Jimmy also got suspended from camp for a day for punching someone, so Wednesday he was home. Jim had to work from home to keep an eye on him. I wanted to make sure that Jimmy didn't have a fun time at home, because that would defeat the purpose of the suspension, so I came up with the idea of making him clean the house all day. If he's going to be home then he's going to work all day. He was to make the beds and dust all the furniture that he could reach and vacuum the whole house. Jim said he did a really great job and was all proud of himself. When I got home from my meeting Jimmy was vacuuming the rug in front of the door with the hand tool. I don't think I accomplished what I set out to do because Jimmy had a great time. Well, at least he knows how to clean now. I was out of ideas at that point to keep him from hitting people so a friend of mine who has a boy suggested putting a rubber band on his wrist and when he gets mad he can flick it. We tried that Thursday and Friday and it seemed to work.
Thursday morning I called Jim's pulmonary doctor, Dr. DeBoer. He had said if we didn't hear back from him by Thursday to give him a call. Turns out he wasn't in the office on Thursday. Now, if he wasn't going to be in the office, why did he tell me to call him Thursday? That's doctors for ya.
Friday morning was Jim's manometry test in Philly. I felt terrible when I got up...just terrible. I'm nauseous and dizzy and crampy and still have diarrhea, especially in the mornings. Thank God Jim's parents came in the morning to take Jimmy to the bus because I don't know how I would have done it. I dragged myself along with Jim to his test. While we were on our way to the train station we got a call from Dr. DeBoer. Jim does not have to be admitted to the hospital. The only bacteria they found in his lungs was the regular stuff in the mouth- no staph. Thank God, because with me feeling sick I didn't know how I was going to handle it by myself.
Then we got to Philly and Dr. Rivera couldn't do the test on Jim. She tried several times, but no go. They do the manometry by sticking a soft tube up your nose and down your throat and then making you swallow. The probe is supposed to measure the pressure at various parts of your throat. The way Jim's bone structure is in his nose stopped the tube from going down, so she had to give up. She said this happens in about 1 in 20 people, so aren't we lucky. She'll call Dr. Spiegel and he'll have to come up with another alternative. Dr. Rivera said that an endoscopy is probably the best bet, but Jim will have to be asleep for that. While we were on our way out of the building Jim said that since Dr. Kozuch's office is right down the hall, and she never called me back and I'm feeling so lousy, we should stop in and see if she could talk to me. I have an appointment Monday morning and was going to wait, but Jim insisted, so that's what we did. After we waited about 45 minutes she came out. Turns out she never got my message. She told me to call her on her private number from now on, and gave me another prescription. This is the powder stuff that you mix with a drink and it's supposed to bind with the c-diff and flush it out of your body. It's very clunky taking this stuff because you have to fit in two doses a day and not within two hours of taking any other medicine because the powder will bind to anything in your system and flush it out...including your medicine. Turns out I've taken this before, about 15 years ago when one of my doctor's thought I might have a problem with excess bile production. But back then the stuff was very gritty and only came in strawberry or chocolate flavors. Now it's smooth and citrus flavored, so it's sort of like Tang. I don't know if it's a coincidence or what but I feel much better today. I'll bet that Jim will have to go on this too because once he made his step down in flagyl dosage he's not feeling that great either. I have SO had enough of us being sick. I've read that it can take up to a year to get rid of this c-diff crap. Literally. Haven't we been through enough?
Saturday, August 11, 2007
Monday, August 6, 2007
Monday August 6, 2007 9:53 PM
We got a couple of donations envelopes from Lahey Clinic in the mail the other day. I think what I'll do is send them some boxes filled with contaminated poop and say, "Here's your donation. You can have your c-diff back."
Jim had a regularly-scheduled follow up appointment with the pulmonary guy last Friday, which I thought was good timing since he's still got this problem with the cold and he's still coughing up crud. I was thinking that the doctor might admit him, so I was waiting for the phone call. Jim called and said, "What are you doing Monday?" I was holding my breath. "Why?" I said. He said he had to report to Kennedy hospital on Monday morning for another bronchoscopy so the doctor could suck the crud out of him again. So that's where we went this morning. I got Nick and Judy to come get Jimmy on the bus and we headed out. I am so sick of hospitals.
Jim reported there at 8 a.m. and he got registered, etc., etc. Then they called him back to the same-day surgical unit at 9. We were waiting in one of those little prep rooms for awhile and then they took him back. They told me the procedure would only take about 15 minutes. I'm sitting there reading my book...my latest read is something I picked up at the Thomas Jefferson University Medical School's bookstore the last time Jim was in the E.R., "Netter's Gastroenterology." I find it very interesting. I hear a nurse come onto the floor and say, "So eight's being admitted? Eight's being admitted?" and my eye scans the numbers above us....one, two, three, four....oh SHIT....we're in eight!. Then the nurse comes in and tells me to wait back in the outer waiting room. I'm waiting and waiting and when Dr. DeBoer comes out I'm expecting him to tell me that Jim's staying, but that's not quite how it went. He showed me pictures of Jim's larynx before and after. He explained to me that when your larynx is not working right your right lung tends to fill up because of the way the bronchial tubes are positioned....the right one is a straight shot down from the larynx, the left one's tubes are slightly turned. Jim's right lung had been completely filled with fluid and it had come up so high is was bubbling around the larynx. This had basically started with the cold, but since Jim still can't fully control his own spit, at night when he sleeps the secretions just drop right down into the lung. He got Jim all cleaned out, and he's sending a sample to the lab. If the sample comes back positive for antibacterial resistant staph again, then he'll call Jim to be admitted, because the only drug he can give him that will work on staph and not interfere with his c-diff infection is intravenous vancomycin. I told Dr. DeBoer....look....Jim's scheduled for a manometry study this Friday at Thomas Jeff. It's necessary he do that test so that he can get back into swallow therapy again and so that he can get his throat stretched. If I have to reschedule that test it will only delay his swallowing progress and it will just delay getting him the help he needs to manage those secretions, and we'll only wind up back at Kennedy again. It's a vicious circle. He understood the need to get him in for that manometry and said to call him on Thursday. If Jim has to be admitted he'll let us go to Philly for the test, then stop at Kennedy on the way home and Jim can check in then. So we'll see what happens. If I were a betting woman, I'd say there's pretty good odds Jim's going back "inside".
I told Jim to please cut this shit out. I'm sick of hospitals. When he got home he seemed pretty with it and stood there talking to his parents and made himself a bowl of cream of wheat. Then he slept for the rest of the day. When he woke up tonight he didn't remember anything that happened, so I had to explain it again. I picked him up a small MickyD's cheeseburger which he managed to get half of down, in between making choking noises and spitting up phlegm. So gross.
I take my last dose of flagyl tonight and I'm scared to death to leave the house now. I can tell my digestive system's still not "right" but until I have another attack there's nothing I can do about it. I have to prove to the doctor that the c-diff's not out of my system. So I bought myself a bag of Depends. Yeah...that sounds gross, but I'm not going on any long drives without them. I said to Jim tonight..."Look what we've been reduced to. You're sick and I'm wearing Depends. Did you ever think it would come to this?" It's so romantic.
Jim had a regularly-scheduled follow up appointment with the pulmonary guy last Friday, which I thought was good timing since he's still got this problem with the cold and he's still coughing up crud. I was thinking that the doctor might admit him, so I was waiting for the phone call. Jim called and said, "What are you doing Monday?" I was holding my breath. "Why?" I said. He said he had to report to Kennedy hospital on Monday morning for another bronchoscopy so the doctor could suck the crud out of him again. So that's where we went this morning. I got Nick and Judy to come get Jimmy on the bus and we headed out. I am so sick of hospitals.
Jim reported there at 8 a.m. and he got registered, etc., etc. Then they called him back to the same-day surgical unit at 9. We were waiting in one of those little prep rooms for awhile and then they took him back. They told me the procedure would only take about 15 minutes. I'm sitting there reading my book...my latest read is something I picked up at the Thomas Jefferson University Medical School's bookstore the last time Jim was in the E.R., "Netter's Gastroenterology." I find it very interesting. I hear a nurse come onto the floor and say, "So eight's being admitted? Eight's being admitted?" and my eye scans the numbers above us....one, two, three, four....oh SHIT....we're in eight!. Then the nurse comes in and tells me to wait back in the outer waiting room. I'm waiting and waiting and when Dr. DeBoer comes out I'm expecting him to tell me that Jim's staying, but that's not quite how it went. He showed me pictures of Jim's larynx before and after. He explained to me that when your larynx is not working right your right lung tends to fill up because of the way the bronchial tubes are positioned....the right one is a straight shot down from the larynx, the left one's tubes are slightly turned. Jim's right lung had been completely filled with fluid and it had come up so high is was bubbling around the larynx. This had basically started with the cold, but since Jim still can't fully control his own spit, at night when he sleeps the secretions just drop right down into the lung. He got Jim all cleaned out, and he's sending a sample to the lab. If the sample comes back positive for antibacterial resistant staph again, then he'll call Jim to be admitted, because the only drug he can give him that will work on staph and not interfere with his c-diff infection is intravenous vancomycin. I told Dr. DeBoer....look....Jim's scheduled for a manometry study this Friday at Thomas Jeff. It's necessary he do that test so that he can get back into swallow therapy again and so that he can get his throat stretched. If I have to reschedule that test it will only delay his swallowing progress and it will just delay getting him the help he needs to manage those secretions, and we'll only wind up back at Kennedy again. It's a vicious circle. He understood the need to get him in for that manometry and said to call him on Thursday. If Jim has to be admitted he'll let us go to Philly for the test, then stop at Kennedy on the way home and Jim can check in then. So we'll see what happens. If I were a betting woman, I'd say there's pretty good odds Jim's going back "inside".
I told Jim to please cut this shit out. I'm sick of hospitals. When he got home he seemed pretty with it and stood there talking to his parents and made himself a bowl of cream of wheat. Then he slept for the rest of the day. When he woke up tonight he didn't remember anything that happened, so I had to explain it again. I picked him up a small MickyD's cheeseburger which he managed to get half of down, in between making choking noises and spitting up phlegm. So gross.
I take my last dose of flagyl tonight and I'm scared to death to leave the house now. I can tell my digestive system's still not "right" but until I have another attack there's nothing I can do about it. I have to prove to the doctor that the c-diff's not out of my system. So I bought myself a bag of Depends. Yeah...that sounds gross, but I'm not going on any long drives without them. I said to Jim tonight..."Look what we've been reduced to. You're sick and I'm wearing Depends. Did you ever think it would come to this?" It's so romantic.
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