hi ya'll im elizabeth been here couple years have posted and commented. i love this home for us so thats why im writting this. so heres the short version if i can do it:
Aidan had back to back to back sinus infection bout 10 weeks ago they were treated each time but after abx was done he would start coughin again three days later. im not denying he has sinus issues and that was the problem at that time. so then things started to change after the last couse of abx. wasnt sinus anymore just a cough lingering around. so that was treated. and of course three days after abx was done cough was back
so that was about 8 weeks of abx. brought him in for checkup decided to do bronchi cause sputum kept coming back negative. ok this was our first bronchi and when his doc was done she said to us that she was very pleased with the way his lungs looked. there wasnt any thick sticky mucus she has to shoot with saline. and he had great looking lungs for a 5yr old with cf. she even said they looked like "normal" lungs a child would have who doesnt have cf.
she did get a sampple got the call that he has pseudomonas. well i just knw it deep inside there was no way this was coming back clean. so the choice was ours to do oral cipro and inhaled tobi for a month culture him again see if it worked and if it didnt then we would have to do iv to treat. well mine and dh thought was hes benn on oral for almost 10 weeks now including cipro and it didnt work so we chose to go right for the big guns. and the doctor agreed that we made the right choice. 2 days later were admitted for picc stay over night everything is great get to go home and do the rest there. i noticed by day 5 the cough was gone. finish the meds pull the line, woo-hoo live is good his b-day was a week away were getting back to some what normal. picc line was pulled 12 days ago.
so now three days ago hes started coughing agin first it was in the morning and i thought oh well thats normal just moving junk around. then the next day coughing in the morning again then a lot the rest of the morning and then slightly thru out the rest of the day. today same thing and the cough is more frequent. oh and its junky and nasty. we also did start cayston in the beginning of december. and he is tollerating that very well. i put a call into his nurse yesterday and was told since its been a crazy weekend which it has b-day party grandmom visited he might be run down. plus last week he had a nast viral thing high fevers for three day then a rash with it. so is this cough part of the viral thing? i put another call into hewr today to let her know whats going one. i really have no more answers left in me i have no idea what this is. im so upset i cry alone and everytime aidan coughs it scares me so bad that he is all better or hes something new. please anyone have any suggestions. im so tense over all this my neck is stinging my back is as stiff as a board. and i feel helpless.
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Elizabeth
mama to aidan 5 w/cf
Aidan had back to back to back sinus infection bout 10 weeks ago they were treated each time but after abx was done he would start coughin again three days later. im not denying he has sinus issues and that was the problem at that time. so then things started to change after the last couse of abx. wasnt sinus anymore just a cough lingering around. so that was treated. and of course three days after abx was done cough was back
so that was about 8 weeks of abx. brought him in for checkup decided to do bronchi cause sputum kept coming back negative. ok this was our first bronchi and when his doc was done she said to us that she was very pleased with the way his lungs looked. there wasnt any thick sticky mucus she has to shoot with saline. and he had great looking lungs for a 5yr old with cf. she even said they looked like "normal" lungs a child would have who doesnt have cf.
she did get a sampple got the call that he has pseudomonas. well i just knw it deep inside there was no way this was coming back clean. so the choice was ours to do oral cipro and inhaled tobi for a month culture him again see if it worked and if it didnt then we would have to do iv to treat. well mine and dh thought was hes benn on oral for almost 10 weeks now including cipro and it didnt work so we chose to go right for the big guns. and the doctor agreed that we made the right choice. 2 days later were admitted for picc stay over night everything is great get to go home and do the rest there. i noticed by day 5 the cough was gone. finish the meds pull the line, woo-hoo live is good his b-day was a week away were getting back to some what normal. picc line was pulled 12 days ago.
so now three days ago hes started coughing agin first it was in the morning and i thought oh well thats normal just moving junk around. then the next day coughing in the morning again then a lot the rest of the morning and then slightly thru out the rest of the day. today same thing and the cough is more frequent. oh and its junky and nasty. we also did start cayston in the beginning of december. and he is tollerating that very well. i put a call into his nurse yesterday and was told since its been a crazy weekend which it has b-day party grandmom visited he might be run down. plus last week he had a nast viral thing high fevers for three day then a rash with it. so is this cough part of the viral thing? i put another call into hewr today to let her know whats going one. i really have no more answers left in me i have no idea what this is. im so upset i cry alone and everytime aidan coughs it scares me so bad that he is all better or hes something new. please anyone have any suggestions. im so tense over all this my neck is stinging my back is as stiff as a board. and i feel helpless.
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Elizabeth
mama to aidan 5 w/cf