After a never-ending exacerbation that a month of oral abx (Bactrim and Levaquin) just didn't do anything to help her get over, they had us bring her in on Monday. Her pft's were down a lot... fev1 down 18% vs. before she got sick, etc. She was admitted for IV's and put on tobra and ceftazidime. We were discharged on Friday to continue the IV's at home (yay, got the eclipse balls- no pump!) Her pft's were even lower on Friday than they had been on Monday, but we were told this was to be expected- that they often got worse before they got better due to all the junk starting to break up in the lungs but they always did them before discharge just to document it; that after tx she is sounding clearer, etc. She has a clinic visit on the 19th (on the 15th day of IV's) to assess how she is doing and determine if she can d/c IV's or if she needs another week.
Questions/concerns:
How long does it typically take to start getting better? This is her first round of IV's... I do know everyone is different, but just looking for personal experiences here.
She has, to date, only cultured staph and a nondangerous pseudo species but this exacerbation her typical meds did nothing to help and the time before didn't help like they typically did. So they admitted and are treating on the presumption that there is PA down there. They got a good sputum sample during airway clearance, and prelim results show the typical cf inflammatory stuff as well as more bacterial stuff than she usually generates during a sputum culture. I hear of so many kids culturing PA for the first time and being asymptomatic, doing tobi for a few months and it sort of subsides for a while, causing no problems. This has me concerned for her, an exacerbation hitting her so hard if this really is a first time PA has come along for her. Again, I know everyone is different, but for kids that this has happened with, have they gotten back to a decent baseline again and or maybe improved some once getting tx targeting it vs. what has been tried before (as in her case, drugs that will attack staph.)
It's been a hard time for her the last year or so- nutritionally she's done great since getting the tube but she's skidded quite a bit with pulmonary health and I hope this helps turn things around a bit. But it's scary. The realities of this disease and it's progression have been hitting hard lately, seeing the changes in my girl the last year.
Questions/concerns:
How long does it typically take to start getting better? This is her first round of IV's... I do know everyone is different, but just looking for personal experiences here.
She has, to date, only cultured staph and a nondangerous pseudo species but this exacerbation her typical meds did nothing to help and the time before didn't help like they typically did. So they admitted and are treating on the presumption that there is PA down there. They got a good sputum sample during airway clearance, and prelim results show the typical cf inflammatory stuff as well as more bacterial stuff than she usually generates during a sputum culture. I hear of so many kids culturing PA for the first time and being asymptomatic, doing tobi for a few months and it sort of subsides for a while, causing no problems. This has me concerned for her, an exacerbation hitting her so hard if this really is a first time PA has come along for her. Again, I know everyone is different, but for kids that this has happened with, have they gotten back to a decent baseline again and or maybe improved some once getting tx targeting it vs. what has been tried before (as in her case, drugs that will attack staph.)
It's been a hard time for her the last year or so- nutritionally she's done great since getting the tube but she's skidded quite a bit with pulmonary health and I hope this helps turn things around a bit. But it's scary. The realities of this disease and it's progression have been hitting hard lately, seeing the changes in my girl the last year.