Home from the hospital and on IV's... a few questions :)

hmw

New member
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.
 

hmw

New member
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.
 

hmw

New member
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.
<br />
<br />Questions/concerns:
<br />
<br />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.
<br />
<br />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.)
<br />
<br />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.
 

cf4life

New member
For me, I am usually feeling better in 3 or 4 days. After a full week I am usually feeling pretty good, much better than the weeks leading up to the exacerbation. After 10 days I am usually at 'peak' and then just waiting to finish out the round of IVs.

It sounds like she is on a typical set of antibiotics for PA, for an IV newbie with non resistant PA. I'm resistant to Tobra and mostly resistant to Ceftaz now. I am sure you know this, but just in case, make sure they check her Tobra levels and have your daughter tell you if she experiences any ringing in the ears...

Is she on any steroids to help with inflammation ?

I can't comment on the eclipse balls. I have always just had them in syringes that I pushed the antibiotic in manually in case of ceftaz or used a syringe pump that pushed the antibiotic in slowly.

Good luck.
 

cf4life

New member
For me, I am usually feeling better in 3 or 4 days. After a full week I am usually feeling pretty good, much better than the weeks leading up to the exacerbation. After 10 days I am usually at 'peak' and then just waiting to finish out the round of IVs.

It sounds like she is on a typical set of antibiotics for PA, for an IV newbie with non resistant PA. I'm resistant to Tobra and mostly resistant to Ceftaz now. I am sure you know this, but just in case, make sure they check her Tobra levels and have your daughter tell you if she experiences any ringing in the ears...

Is she on any steroids to help with inflammation ?

I can't comment on the eclipse balls. I have always just had them in syringes that I pushed the antibiotic in manually in case of ceftaz or used a syringe pump that pushed the antibiotic in slowly.

Good luck.
 

cf4life

New member
For me, I am usually feeling better in 3 or 4 days. After a full week I am usually feeling pretty good, much better than the weeks leading up to the exacerbation. After 10 days I am usually at 'peak' and then just waiting to finish out the round of IVs.
<br />
<br />It sounds like she is on a typical set of antibiotics for PA, for an IV newbie with non resistant PA. I'm resistant to Tobra and mostly resistant to Ceftaz now. I am sure you know this, but just in case, make sure they check her Tobra levels and have your daughter tell you if she experiences any ringing in the ears...
<br />
<br />Is she on any steroids to help with inflammation ?
<br />
<br />I can't comment on the eclipse balls. I have always just had them in syringes that I pushed the antibiotic in manually in case of ceftaz or used a syringe pump that pushed the antibiotic in slowly.
<br />
<br />Good luck.
 

hmw

New member
Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0">
They fiddled w/dose twice to get her levels right before discharge and the nurse who will come to do the dressing changes will draw levels again at some point. They did tell me to be on the lookout for dizziness/loss of balance or ringing in ears.

She nebs Pulmicort; on sick plan it's the 1mg dose 4x/day and that helps a lot. Since increasing to that dose it's minimized how often she has to go on Prednisone; her last exacerbation she needed a 60mg month-long taper. Her cough has been so productive that they felt the nebs & abx was enough at this point. (As an aside, I am loving the hypertonic saline for her too- she is moving SO much every time she uses it, and it's not a dry irritated cough at all, but a good productive one.)

I guess how she responds to these meds will also be a big clue in what she is growing down there. If they do for her what the orals could not, it seems to me that would be an indication that it wasn't the run of the mill staph we've always known about causing her problems. At her followup clinic appt, we will be discussing ordering a chest ct and if culture results aren't as informative as they hope, a bronch.
 

hmw

New member
Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0">
They fiddled w/dose twice to get her levels right before discharge and the nurse who will come to do the dressing changes will draw levels again at some point. They did tell me to be on the lookout for dizziness/loss of balance or ringing in ears.

She nebs Pulmicort; on sick plan it's the 1mg dose 4x/day and that helps a lot. Since increasing to that dose it's minimized how often she has to go on Prednisone; her last exacerbation she needed a 60mg month-long taper. Her cough has been so productive that they felt the nebs & abx was enough at this point. (As an aside, I am loving the hypertonic saline for her too- she is moving SO much every time she uses it, and it's not a dry irritated cough at all, but a good productive one.)

I guess how she responds to these meds will also be a big clue in what she is growing down there. If they do for her what the orals could not, it seems to me that would be an indication that it wasn't the run of the mill staph we've always known about causing her problems. At her followup clinic appt, we will be discussing ordering a chest ct and if culture results aren't as informative as they hope, a bronch.
 

hmw

New member
Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />They fiddled w/dose twice to get her levels right before discharge and the nurse who will come to do the dressing changes will draw levels again at some point. They did tell me to be on the lookout for dizziness/loss of balance or ringing in ears.
<br />
<br />She nebs Pulmicort; on sick plan it's the 1mg dose 4x/day and that helps a lot. Since increasing to that dose it's minimized how often she has to go on Prednisone; her last exacerbation she needed a 60mg month-long taper. Her cough has been so productive that they felt the nebs & abx was enough at this point. (As an aside, I am loving the hypertonic saline for her too- she is moving SO much every time she uses it, and it's not a dry irritated cough at all, but a good productive one.)
<br />
<br />I guess how she responds to these meds will also be a big clue in what she is growing down there. If they do for her what the orals could not, it seems to me that would be an indication that it wasn't the run of the mill staph we've always known about causing her problems. At her followup clinic appt, we will be discussing ordering a chest ct and if culture results aren't as informative as they hope, a bronch.
<br />
<br />
 
M

Mommafirst

Guest
The first few times we did IVs Alyssa was showing good improvement within 5 days. But the last two times, it was closer to 8-10 days before it really was on an upswing.


Thinking of you and hoping that Emily is doing much better ASAP.
 
M

Mommafirst

Guest
The first few times we did IVs Alyssa was showing good improvement within 5 days. But the last two times, it was closer to 8-10 days before it really was on an upswing.


Thinking of you and hoping that Emily is doing much better ASAP.
 
M

Mommafirst

Guest
The first few times we did IVs Alyssa was showing good improvement within 5 days. But the last two times, it was closer to 8-10 days before it really was on an upswing.
<br />
<br />
<br />Thinking of you and hoping that Emily is doing much better ASAP.
 
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