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Details -- What the heck happened?
Hello dear RCTY-ers....here's an excerpt of a letter I sent to a friend
which details what's been going on. Thanks for all your concern...as you can imagine, it's a really long, weird story. We're finally back from the hospital. We were discharged last Friday...what an ordeal! We went in on June 2nd for a pretty routine pH study to monitor Lainey's GERD. While doing an x-ray of her abdomen to check the placement of the pH probe in her stomach, they noticed that one lung was larger than the other. Upon further scanning, they found a pretty sizable mass in her chest, not really attached to anything, just floating somewhere between her trachea and esophagus. Unfortunately for Lammy, the mass was totally obstructing one of her bronchial tubes, so she was breathing essentially with only one lung. They sprang into action pretty quickly over there at CHOC, which is the one good thing I can say about it I guess...over the next few days, poor Lammy went through a tracheoscopy and a full on biopsy in which the surgeon had to cut into her chest and pull out part of the mass. After the mass was partially extracted, I don't think I'm exaggerating when I say that I was visited by about 8 different specialists talking to me about all manner of things from disease this and cancer that. Bleh. Finally, the diagnosis was made, and I was visited by Infectious Disease who told me it was Tuberculosis. This came as a bit of a shock to me since Lammy was never outwardly sick...no fever, no coughing, no sneezing...not even so much as a sniffle. Her lungs on top of that were perfectly clear. I thought he was full of it and I told him so. I asked what made him think it was TB, and he pointed out that Lammy had a positive skin test. Yeah, well so do 1/3 of all Americans, but that doesn't mean that thy all have TB. Then he went into some mumbling mode and excused himself because he had a cold. I asked the other residents who visited why they thought she had TB, and they all said, "because it couldn't be anything else." I hate it when people treat you like you're stupid. :P Finally, I got to the bottom of it sort of when Lainey's pediatrician came to visit. She was understandably very concerned as to what was going on. She looked through Lammy's charts with me and said that they thought it was TB because of some granulomas they found in the biopsy. I asked her if these granulomas only occurred in TB cases, and after consulting with some other doctors, she told me apparently yes. From a purely logical perspective though, this was the most illogical diagnosis they could have made because according to Infectious Disease's own admission, it's impossible to develop TB disease unless you are regularly exposed to somebody with the disease...and out of my own germaphobic lifestyle, Lammy has only been exposed, to me, Adam, and her grandfather...none of whom have TB. Regardless of my protests, they stuck Lammy on the hell that is TB medication. She had to take four different antibiotics, all of which made her extremely nauseous. One in particular would cause her to throw up every day, and she dreaded seeing the nurses every day. She would curl up under my arm and cry until they went away. We were put in isolation where nobody could come in or out without a mask...and later I found the nurses were keeping people out in general simply because they didn't want to bother with telling people to put on masks. Evil nurses. Grrrr We were released on Friday, as I said earlier, and put in the care of the Public Health Department, who would not trust me to give Lammy her medicine every day...no, they insisted on coming over three times a day to give the meds to her themselves. This put a damper on things because that would basically mean that I couldn't leave the house for more than a few hours at a time, which made it absolutely impossible to do any errands. Meanwhile, Lammy's liver enzymes started shooting up, and to avoid the risk of giving her full-blown hepatitis, the ID doctor order her to stop her medication over the weekend and to resume on Tuesday after she'd take another blood test. We stopped over the weekend, and got some more blood drawn on Monday. Tuesday morning, I get a call from the ID office frantically telling me not to give Lammy any more medicine. I get a phone call later on that day telling me not to give her any more medicine for the next week, until next Thursday. I asked why, and the nurse told me that their initial diagnosis was incorrect, and that Lammy didn't have TB after all, but that the doctor was overrun with patients (the other docs in his practice were out on vacation and left him alone) and that he would explain as soon as he could. So that's where I am now...I'm angry and happy at the same time. Hate to tell them "I told you so," but...you know. I'm pretty exhausted and Lammy is severely traumatized from the whole hospital stay. I hope she recovers soon. I think she's worse coming out of the hospital than she ever was going in, poor thing. --Allaya |
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