Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 Hi , I think if doctors would listen more to patients and parents they would have their work cut out for them, plus they might learn a thing or two. I used to be a passive parent, whatever the doctor said I would do. But, for almost 9 years a could had been diagnosed and I could have made her life a little easier, granted she is not classic, but a child who has a perennial runny nose has to have something other than allergies. sounds like my 7 year old, he can come up with some names for his toys and of course each and everyone of them has a name and each and everyone of them I am suppost to remember :-). Love to all of you, mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf > , > Dr Clayton!!!!! That is the one who's name I couldn't think of. We like him. A momentary case of brain block! lol > > I'll tell ya, I had a bad moment with a fellow during 's first hospital stay at dx. wouldn't drink her bottle or eat much of anything so we were very worried, but she was eating a bit more each day. Well, the dietitian has left word that she wanted to be up to x amount of ounces by Saturday. She was one ounce short, so on Sunday the resident in question (who was very cold with -that may have had to do with the constant screaming though) decided that she was going to have a ng tube feed for that one ounce. I told him in no uncertain terms " NO way! we are not putting her through that for one ounce, she has been put through enough in the last week and a half. " He went and ordered it anyway!!!! When the nurse came into the room in the middle of the night to take to the " treatment room " I asked " why? " - " For her NG tube feed " I was told. I again said NO way! I explained the situation to the nurse and she asked me if I was joking! an NG feed for 1 oz. They don't normally do that! She said that she wouldn't let them do it to her kid either for such a small amount! Anyway, when Hanna, the dietitian came in on Monday she said she saw no reason for the ng feed either since was eating a bit more everyday. All the other docs and nurses agreed with ME about this. > I did have another run in with the same resident when was quite ill - I had to call after hours, so I guess he was cranky about having to answer my call and He told me " She is gonna get colds just like any other kid, just give her some Tylenol " I was HOT! I am one of those people who don't call after office hours unless I feel that it's an emergency. Anyway, I spoke to Dr. Weiner the next AM and he saw her immediately and admitted her, she was in crappy shape. > Now I'll tell you the ironic thing, and are now both participating in this former jerk fellow's PFT study. Dr. Mayers has come a long way, hasn't he? They all learn something about how to handle parents and kids after a while. As much as it sucks, we are an important part of that education. > > just got over a cough she had going on since April! As it turns out it wasn't allergies as we all suspected. She was having Reflux again! back on zantac and it was gone in a few days! She doesn't mind the light thing in her ears. we always ask her if she is growing potatoes or carrots in there but she doesn't like it up her nose. > > and an imaginary baby sister? possibly Now we have a " baby brother " doll. everywhere we go she brings him. She tells people that she has a baby brother named- are you ready for this?- " Shoo Wawa " everyone thinks that I really have a child named " Chihuahua " and I have to explain and show the doll. She used to carry another baby named " Naked " . I suppose you can guess it's state of dress. She also always has her blanket " Pooka " with her. Don't ask me where she comes up with these names. > > I am wondering if you are the same mom I met on a few occasions at CHOP. She had a little boy about the same age, named too. HMMMMM > > > > > From: jacesjoggers@a... > To: cfparents > Sent: Monday, July 07, 2003 4:38 PM > Subject: Re: , Re: When do you tune-up? > > > Hi , > > We love Dr. stein, he is kinda gruff sometimes, but he is real down to > earth with us. didnt start the screaming thing until about 2 visits ago, > now you would think the light to look in the nose and ears was some kind of > horrible creature. We had Dr. Weiner during one of our hospital stays, and we > have talked to almost all of the docs at one point or another. Drs. Clayton, > Scanlon, Arens, Panitch (he was the one on when was diagnosed, I didnt > like him at first, like it was his fault my son had CF, I think he is a neat > guy now though). I dont think I have found one of the docs that I dont like > yet, although I have had my not-so-likeable moments with a fellow here and > there, and definately have had a time with a few not so likeable residents. > > We go back to clinic in August, if the cough gets better that is. > > Just a question, but is your the little one that has the imaginary > baby sister that sits at the nurses station???? > > Gotta go get ready for work, have a great day. > > , mommy of 4, almost 4 with CF > > > Quote Link to comment Share on other sites More sharing options...
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