Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi all, had clinic yesterday. I thought I'd write with an update. Well there is some not so great news. She has lost 4 lbs. They definitely weren't happy with that. They want her to eat more and try some supplement bars, hi-protein, hi-calorie so we picked up a few at the drugstore for her to try.She generally hates all that sort of thing but she said she'd try. Also her FEV1 was down to 82%. Now I know many of you would kill for 82%, but 's best last FEV1 in Nov was 110% so you can see why I am concerned. The docs feel she has some infection brewing and put her on Bactrim for 2 weeks plus we are to start her back on her Tobi. And she was hoping to get off it. Plus she is to up her treatments with albuterol and Intal to 3x a day and also do her Vest 30 minutes 3x a day. We are to see them again in one month and if things haven't improved (her weight and PFT's)it will be tune up time. They took a culture and I will need to call to see what grows next week. If it is pseudomonas I will push for IV's now. Plus she is going to be tested for diabetes and have her electrolytes and CBC checked at our HMO clinic. I will have to call and set that up later today. Yes it is 3:30 am, I just can't sleep. We have people coming in the morning to do our heavy cleaning that I can't manage anymore, and I guess I am nervous about that plus . Oh and she wasn't running a fever at clinic but last night she felt hot and I took it and it was 101. I guess she definitely has something going on. She inisisted she felt fine yesterday but by last night she didn't. Anyway if you have any spare good thoughts or (the " p " word) we would appreciate. Thanks and love you all, M mom of Nick age 21 nocf and age 20 wcf Orange Co CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 I have always said that if you aren't sick when you go to clinic, you will be. It makes since that they are exposed to whatever else might be floating around. It makes you wonder if it is such a good idea to go every three months if everything is ok. Tina W., mother of , 18yo wcf Re: 's clinic only so-so Doesn't make sense to me either, but for years we have experienced the same thing. M ----- Original Message ----- " Morey " wrote: > Hi Deb, > I know, it is really crazy but it seems like every time we go, and if Ang isn't sick she gets sick soon after. Seems too fast to actually be catching something there but it is suspicious! ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 It is really weird isn't it ? love, Re: 's clinic only so-so Doesn't make sense to me either, but for years we have experienced the same thing. M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 , You bet! I will keep in my very special thoughts, for sure. I am glad you caught it early, well, it is also that time of the year, for all sort of bugs to let loose. Many, many good vibes for . Love to both of you! > Hi all, > had clinic yesterday. I thought I'd write with an update. Well there is some not so great news. She has lost 4 lbs. They definitely weren't happy with that. They want her to eat more and try some supplement bars, hi-protein, hi-calorie so we picked up a few at the drugstore for her to try.She generally hates all that sort of thing but she said she'd try. > Also her FEV1 was down to 82%. Now I know many of you would kill for 82%, but 's best last FEV1 in Nov was 110% so you can see why I am concerned. The docs feel she has some infection brewing and put her on Bactrim for 2 weeks plus we are to start her back on her Tobi. And she was hoping to get off it. Plus she is to up her treatments with albuterol and Intal to 3x a day and also do her Vest 30 minutes 3x a day. We are to see them again in one month and if things haven't improved (her weight and PFT's)it will be tune up time. They took a culture and I will need to call to see what grows next week. If it is pseudomonas I will push for IV's now. Plus she is going to be tested for diabetes and have her electrolytes and CBC checked at our HMO clinic. I will have to call and set that up later today. Yes it is 3:30 am, I just can't sleep. We have people coming in the morning to do our heavy cleaning that I can't manage anymore, and I guess I am nervous about that plus . Oh and she wasn't running a fever at clinic but last night she felt hot and I took it and it was 101. I guess she definitely has something going on. She inisisted she felt fine yesterday but by last night she didn't. Anyway if you have any spare good thoughts or (the " p " word) we would appreciate. > > Thanks and love you all, > M > mom of Nick age 21 nocf and age 20 wcf > Orange Co CA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Thanks ! I can always count on my list buddies for special thoughts! is doing better today and she went to school. She is also cooperating with the extra treatments and Vest, although we had a storm yesterday and you got it, the power went out while she was doing her treatment and Vest. Good timing. love, Quote Link to comment Share on other sites More sharing options...
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