clawson5104
New member
wow...what a day.
good thing went called cf clinic......wade's xrays show sinuses are completely full of junk, his right lung is really wheezing, left lung is "tight", but xrays dont show any pneumonia.....but is a little hazier than last time. bowel xray shows he is completely backed up too. hello miralax. hello 21 days of augmentin....and we officially start pulmozyme monday. so i gotta learn that one. cpt is officially twice a day. hello hand cramps. his so called mild cf or atypical.....whatever.....seems is now beginning to show more symptoms. we are gonna be doing a lung CT scan when he gets over all this.....and well, with wade that could be summertime. check and see how his lungs really are i guess. if anything shows up, they will give him a vest. personally i think he should just get one being that he is gonna have cpt and pulmozyme anyhow, on top of albuterol and pulmocort. he lost the pound. yeah the one that took a year to gain.....gone. but he is already starting to eat again.....so maybe it wont take so long to put it back on. (25.7lbs) he will be 3 in june. but great height.he is mean again too, and being that insurance wont pay for xopenex and cf clinic is out of samples,,,,,,,albuterol will help him be meaner. he's already jumping off furniture. ( you would think as much as i chase him i would be in shape) so , there's the update.
I am sooooooo relieved to know that i am not as crazy as i thought.....well......but that "something" was wrong. i am relieved that all this was caught early enough to take care of my meds....not surgery. (could've been caught sooner if pediatrician knew to do xrays....cf'er. that's what pulmonologist says, anytime cf'er has sinus/respiratory infections xrays should always be done, since they are more prone to blockages.
But I am relieved to know he is gonna do better. But i am upset as a mom to see him have to go thru this, upset that symptoms are showing more.........(although in back of my mind.....i alread knew this) i know he is still not as bad as some, and he could be much worse, i was just hoping the initial idea of "mild" would actually be the case and the thoughts in my head were wrong. i really am grateful, but a little scared again....and feel like this just starts over when i start understanding something...lol. figures.
they done a throat culture too, donno that yet.
he typically has some yeast, but nothing else so far. we go back one month. and if he is eating and doing better she will do bloodwork, check all the vitamins and stuff. sooooo, we will see.
thanks for your prayer!!! still will always need it, especially my brain, it's slow today. i gotta read pulmozyme info and watch video. . and if there's anything you guys wanna throw in feel free, i know i will be loaded with questions.
thanks, and good night......and sorry if this rambles on....i have had 2 hrs of sleep and drove5 hrs total for cf, then the rest of evening ball practices, and dropping off and picking up meds, and then hubby decides to eat mcdonald's a job with a family of 6......and closest mcdonald's is 12 miles away....takes 25 minutes to get there.....curves, mountains. (i know.....it's crazy.....alot of you are falling over at the thought of going that far just for mcdonalds, but same for walmart, and any other fast food, shopping in bigger than dollar stores.....) so got home to start bed time and breathing treatments, medicines, cpt, and tuck the rest of the boys in.
ballgames all day tomorrow. but if miralax kicks in i'll be home with wade. so good night again.
good thing went called cf clinic......wade's xrays show sinuses are completely full of junk, his right lung is really wheezing, left lung is "tight", but xrays dont show any pneumonia.....but is a little hazier than last time. bowel xray shows he is completely backed up too. hello miralax. hello 21 days of augmentin....and we officially start pulmozyme monday. so i gotta learn that one. cpt is officially twice a day. hello hand cramps. his so called mild cf or atypical.....whatever.....seems is now beginning to show more symptoms. we are gonna be doing a lung CT scan when he gets over all this.....and well, with wade that could be summertime. check and see how his lungs really are i guess. if anything shows up, they will give him a vest. personally i think he should just get one being that he is gonna have cpt and pulmozyme anyhow, on top of albuterol and pulmocort. he lost the pound. yeah the one that took a year to gain.....gone. but he is already starting to eat again.....so maybe it wont take so long to put it back on. (25.7lbs) he will be 3 in june. but great height.he is mean again too, and being that insurance wont pay for xopenex and cf clinic is out of samples,,,,,,,albuterol will help him be meaner. he's already jumping off furniture. ( you would think as much as i chase him i would be in shape) so , there's the update.
I am sooooooo relieved to know that i am not as crazy as i thought.....well......but that "something" was wrong. i am relieved that all this was caught early enough to take care of my meds....not surgery. (could've been caught sooner if pediatrician knew to do xrays....cf'er. that's what pulmonologist says, anytime cf'er has sinus/respiratory infections xrays should always be done, since they are more prone to blockages.
But I am relieved to know he is gonna do better. But i am upset as a mom to see him have to go thru this, upset that symptoms are showing more.........(although in back of my mind.....i alread knew this) i know he is still not as bad as some, and he could be much worse, i was just hoping the initial idea of "mild" would actually be the case and the thoughts in my head were wrong. i really am grateful, but a little scared again....and feel like this just starts over when i start understanding something...lol. figures.
they done a throat culture too, donno that yet.
he typically has some yeast, but nothing else so far. we go back one month. and if he is eating and doing better she will do bloodwork, check all the vitamins and stuff. sooooo, we will see.
thanks for your prayer!!! still will always need it, especially my brain, it's slow today. i gotta read pulmozyme info and watch video. . and if there's anything you guys wanna throw in feel free, i know i will be loaded with questions.
thanks, and good night......and sorry if this rambles on....i have had 2 hrs of sleep and drove5 hrs total for cf, then the rest of evening ball practices, and dropping off and picking up meds, and then hubby decides to eat mcdonald's a job with a family of 6......and closest mcdonald's is 12 miles away....takes 25 minutes to get there.....curves, mountains. (i know.....it's crazy.....alot of you are falling over at the thought of going that far just for mcdonalds, but same for walmart, and any other fast food, shopping in bigger than dollar stores.....) so got home to start bed time and breathing treatments, medicines, cpt, and tuck the rest of the boys in.
ballgames all day tomorrow. but if miralax kicks in i'll be home with wade. so good night again.