Post bronch response?

[TestifyToLove]

<P>I know this has not been M's response to bronch before--and sadly we're becoming old hats at these stupid things considering we've done three this summer and they are kicking around whether they are going to do another one in October.</P>
<P> </P>
<P>However, this time, he has had a severe reaction to this thing.  He spiked a fairly high fever the night afterward.  The fellow at Children's said it's a normal response...but he was a Heptalogy fellow and it's certainly not a response we've had before.  The tachacardia we *have* seen after all of his bronchs.</P>
<P> </P>
<P>Most disturbing has been the cough.  Now granted, he had no cough going in, but needed to have one.  Best we can tell, he's been supressing his cough because he doesn't like it, but lacks the cognitive skills to understand that refusing to cough--even during breathing treatments, is actually counter-intiuative.  So, they found a LOT of mucous and infections in his lungs.  However, they found the same six monts ago and he didn't have this horrid lingering cough.</P>
<P> </P>
<P>He is having very frequent coughing fits like I have never seen in him before.  They literally take him to the ground and he's writhing in pain and screaming and crying.  Okay, he has severe Autism so he doesn't have a high tolerance for his CF struggles anyway.  However, I have NEVER seen him like this--not ever.</P>
<P> </P>
<P>I already called his doctors back.  They increased his HTS, Pulmozyme and ordered oral Levaquin.  I suspect what he actually needs is yet another round of IVs.  However, he simply won't tolerate that right now if we were to try.</P>
<P> </P>
<P>He's having coughing fits so bad that he's actually voluntarily walking over to his vest and hooking it up in the hopes it will help the coughing move stuff out.  He HATES breathing treatments.  He's fairly prone to throwing equipment across the room.  He routinely drags his vest to try and destroy it.  And, he often poops himself to try and get the treatments stopped.  For him to hook himself up to his vest of his own volition is unheard of with M.</P>
<P> </P>
<P>Bronch was Friday and we're now 5 days out.  Is this still recovery from the bronch, or are we looking at a new baseline here?  Anything else I can do to help him?</P>

 

[TestifyToLove]

<P>I know this has not been M's response to bronch before--and sadly we're becoming old hats at these stupid things considering we've done three this summer and they are kicking around whether they are going to do another one in October.</P>
<P></P>
<P>However, this time, he has had a severe reaction to this thing. He spiked a fairly high fever the night afterward. The fellow at Children's said it's a normal response...but he was a Heptalogy fellow and it's certainly not a response we've had before. The tachacardia we *have* seen after all of his bronchs.</P>
<P></P>
<P>Most disturbing has been the cough. Now granted, he had no cough going in, but needed to have one. Best we can tell, he's been supressing his cough because he doesn't like it, but lacks the cognitive skills to understand that refusing to cough--even during breathing treatments, is actually counter-intiuative. So, they found a LOT of mucous and infections in his lungs. However, they found the same six monts ago and he didn't have this horrid lingering cough.</P>
<P></P>
<P>He is having very frequent coughing fits like I have never seen in him before. They literally take him to the ground and he's writhing in pain and screaming and crying. Okay, he has severe Autism so he doesn't have a high tolerance for his CF struggles anyway. However, I have NEVER seen him like this--not ever.</P>
<P></P>
<P>I already called his doctors back. They increased his HTS, Pulmozyme and ordered oral Levaquin. I suspect what he actually needs is yet another round of IVs. However, he simply won't tolerate that right now if we were to try.</P>
<P></P>
<P>He's having coughing fits so bad that he's actually voluntarily walking over to his vest and hooking it up in the hopes it will help the coughing move stuff out. He HATES breathing treatments. He's fairly prone to throwing equipment across the room. He routinely drags his vest to try and destroy it. And, he often poops himself to try and get the treatments stopped. For him to hook himself up to his vest of his own volition is unheard of with M.</P>
<P></P>
<P>Bronch was Friday and we're now 5 days out. Is this still recovery from the bronch, or are we looking at a new baseline here? Anything else I can do to help him?</P>

 

[TestifyToLove]

<P><BR>I know this has not been M's response to bronch before--and sadly we're becoming old hats at these stupid things considering we've done three this summer and they are kicking around whether they are going to do another one in October.</P>
<P></P>
<P>However, this time, he has had a severe reaction to this thing. He spiked a fairly high fever the night afterward. The fellow at Children's said it's a normal response...but he was a Heptalogy fellow and it's certainly not a response we've had before. The tachacardia we *have* seen after all of his bronchs.</P>
<P></P>
<P>Most disturbing has been the cough. Now granted, he had no cough going in, but needed to have one. Best we can tell, he's been supressing his cough because he doesn't like it, but lacks the cognitive skills to understand that refusing to cough--even during breathing treatments, is actually counter-intiuative. So, they found a LOT of mucous and infections in his lungs. However, they found the same six monts ago and he didn't have this horrid lingering cough.</P>
<P></P>
<P>He is having very frequent coughing fits like I have never seen in him before. They literally take him to the ground and he's writhing in pain and screaming and crying. Okay, he has severe Autism so he doesn't have a high tolerance for his CF struggles anyway. However, I have NEVER seen him like this--not ever.</P>
<P></P>
<P>I already called his doctors back. They increased his HTS, Pulmozyme and ordered oral Levaquin. I suspect what he actually needs is yet another round of IVs. However, he simply won't tolerate that right now if we were to try.</P>
<P></P>
<P>He's having coughing fits so bad that he's actually voluntarily walking over to his vest and hooking it up in the hopes it will help the coughing move stuff out. He HATES breathing treatments. He's fairly prone to throwing equipment across the room. He routinely drags his vest to try and destroy it. And, he often poops himself to try and get the treatments stopped. For him to hook himself up to his vest of his own volition is unheard of with M.</P>
<P></P>
<P>Bronch was Friday and we're now 5 days out. Is this still recovery from the bronch, or are we looking at a new baseline here? Anything else I can do to help him?</P>

 

[Ratatosk]

DS hasn't had a bronch; however, IMO, it does seem like a long time to have a reaction to the bronch. I wish I had some advice or suggestions. I imagine one of the things he dislikes about vesting is the way it makes his ears feel among other things. How does he do with CPT? Would he be okay with sitting thru that if he dislikes the vest so much? Can you or do you use disposable overnight diapers for treatments?

As for getting stuff up an out, ds rarely coughs anything out, but has more sinus issues. With my mucus phobia he takes great pleasure in hacking up lougies or will agree to doing a sinus rinse just to get a reaction out of me.

 

[Ratatosk]

DS hasn't had a bronch; however, IMO, it does seem like a long time to have a reaction to the bronch. I wish I had some advice or suggestions. I imagine one of the things he dislikes about vesting is the way it makes his ears feel among other things. How does he do with CPT? Would he be okay with sitting thru that if he dislikes the vest so much? Can you or do you use disposable overnight diapers for treatments?

As for getting stuff up an out, ds rarely coughs anything out, but has more sinus issues. With my mucus phobia he takes great pleasure in hacking up lougies or will agree to doing a sinus rinse just to get a reaction out of me.

 

[Ratatosk]

DS hasn't had a bronch; however, IMO, it does seem like a long time to have a reaction to the bronch. I wish I had some advice or suggestions. I imagine one of the things he dislikes about vesting is the way it makes his ears feel among other things. How does he do with CPT? Would he be okay with sitting thru that if he dislikes the vest so much? Can you or do you use disposable overnight diapers for treatments?
<br />
<br />As for getting stuff up an out, ds rarely coughs anything out, but has more sinus issues. With my mucus phobia he takes great pleasure in hacking up lougies or will agree to doing a sinus rinse just to get a reaction out of me.

 

[JORDYSMOM]

<P>I don't have any experience with bronchs either, but I have read on here that they can "stir things up".  Sounds like that may be the case this time for M.  I'm so sorry he is struggling like this.  I can't even imagine how difficult this must be for him and you.  I hope someone with experience in this area will chime in on this thread.</P>
<P> </P>
<P>In the meantime, I'm thinking of you guys, and praying that things calm down for you.</P>
<P> </P>
<P>Stacey</P>

 

[JORDYSMOM]

<P>I don't have any experience with bronchs either, but I have read on here that they can "stir things up". Sounds like that may be the case this time for M. I'm so sorry he is struggling like this. I can't even imagine how difficult this must be for him and you. I hope someone with experience in this area will chime in on this thread.</P>
<P></P>
<P>In the meantime, I'm thinking of you guys, and praying that things calm down for you.</P>
<P></P>
<P>Stacey</P>

 

[JORDYSMOM]

<P><BR>I don't have any experience with bronchs either, but I have read on here that they can "stir things up". Sounds like that may be the case this time for M. I'm so sorry he is struggling like this. I can't even imagine how difficult this must be for him and you. I hope someone with experience in this area will chime in on this thread.</P>
<P></P>
<P>In the meantime, I'm thinking of you guys, and praying that things calm down for you.</P>
<P></P>
<P>Stacey</P>

 

[sdelorenzo]

My son had a bronch on Christmas Eve. He had started on IV's in the hospital so we were still there. That night after his bronch he had a high fever and coughed up a little blood. They did a follow up xray the next day. It showed a lung abcess forming. It was quite a serious condition. Thankfully jack was already on IV medications and he was in the hospital. Not sure when I would have figured out he was that sick. His abcess was quite rare. That was just our experience a few months ago following a bronch. It never hurts to
get a followup xray to see what has taken place since his bronch. Hope he starts to feel better soon. Sorry to hear about how difficult things are in addition to Cf.
Sharon, mom of Sophia, 10 and Jack, 7 both with Cf, grant, 2 and Paige, 10 months both without CF

 

[sdelorenzo]

My son had a bronch on Christmas Eve. He had started on IV's in the hospital so we were still there. That night after his bronch he had a high fever and coughed up a little blood. They did a follow up xray the next day. It showed a lung abcess forming. It was quite a serious condition. Thankfully jack was already on IV medications and he was in the hospital. Not sure when I would have figured out he was that sick. His abcess was quite rare. That was just our experience a few months ago following a bronch. It never hurts to
get a followup xray to see what has taken place since his bronch. Hope he starts to feel better soon. Sorry to hear about how difficult things are in addition to Cf.
Sharon, mom of Sophia, 10 and Jack, 7 both with Cf, grant, 2 and Paige, 10 months both without CF

 

[sdelorenzo]

My son had a bronch on Christmas Eve. He had started on IV's in the hospital so we were still there. That night after his bronch he had a high fever and coughed up a little blood. They did a follow up xray the next day. It showed a lung abcess forming. It was quite a serious condition. Thankfully jack was already on IV medications and he was in the hospital. Not sure when I would have figured out he was that sick. His abcess was quite rare. That was just our experience a few months ago following a bronch. It never hurts to
<br />get a followup xray to see what has taken place since his bronch. Hope he starts to feel better soon. Sorry to hear about how difficult things are in addition to Cf.
<br />Sharon, mom of Sophia, 10 and Jack, 7 both with Cf, grant, 2 and Paige, 10 months both without CF

 

[sdelorenzo]

My son had a bronch on Christmas Eve. He had started on IV's in the hospital so we were still there. That night after his bronch he had a high fever and coughed up a little blood. They did a follow up xray the next day. It showed a lung abcess forming. It was quite a serious condition. Thankfully jack was already on IV medications and he was in the hospital. Not sure when I would have figured out he was that sick. His abcess was quite rare. That was just our experience a few months ago following a bronch. It never hurts to
get a followup xray to see what has taken place since his bronch. Hope he starts to feel better soon. Sorry to hear about how difficult things are in addition to Cf.
Sharon, mom of Sophia, 10 and Jack, 7 both with Cf, grant, 2 and Paige, 10 months both without CF

 

[sdelorenzo]

My son had a bronch on Christmas Eve. He had started on IV's in the hospital so we were still there. That night after his bronch he had a high fever and coughed up a little blood. They did a follow up xray the next day. It showed a lung abcess forming. It was quite a serious condition. Thankfully jack was already on IV medications and he was in the hospital. Not sure when I would have figured out he was that sick. His abcess was quite rare. That was just our experience a few months ago following a bronch. It never hurts to
get a followup xray to see what has taken place since his bronch. Hope he starts to feel better soon. Sorry to hear about how difficult things are in addition to Cf.
Sharon, mom of Sophia, 10 and Jack, 7 both with Cf, grant, 2 and Paige, 10 months both without CF

 

[sdelorenzo]

My son had a bronch on Christmas Eve. He had started on IV's in the hospital so we were still there. That night after his bronch he had a high fever and coughed up a little blood. They did a follow up xray the next day. It showed a lung abcess forming. It was quite a serious condition. Thankfully jack was already on IV medications and he was in the hospital. Not sure when I would have figured out he was that sick. His abcess was quite rare. That was just our experience a few months ago following a bronch. It never hurts to
<br />get a followup xray to see what has taken place since his bronch. Hope he starts to feel better soon. Sorry to hear about how difficult things are in addition to Cf.
<br />Sharon, mom of Sophia, 10 and Jack, 7 both with Cf, grant, 2 and Paige, 10 months both without CF

 

[Rebjane]

Sharon,

Was the abcess from the bronch or what is already there? Just curious.

My daughter had a bronch when she was 2 and she had it for chronic cough and to get an accurate culture. It did increase her cough ,especially that day, her airway became more irritated than it already was. She was already on IV antibiotics and continued those for a few weeks after the bronch; and evenutally her cough decreased and went away. She has been on an oral prophylactic antibiotic since that time.

 

[Rebjane]

Sharon,

Was the abcess from the bronch or what is already there? Just curious.

My daughter had a bronch when she was 2 and she had it for chronic cough and to get an accurate culture. It did increase her cough ,especially that day, her airway became more irritated than it already was. She was already on IV antibiotics and continued those for a few weeks after the bronch; and evenutally her cough decreased and went away. She has been on an oral prophylactic antibiotic since that time.

 

[Rebjane]

Sharon,
<br />
<br />Was the abcess from the bronch or what is already there? Just curious.
<br />
<br />My daughter had a bronch when she was 2 and she had it for chronic cough and to get an accurate culture. It did increase her cough ,especially that day, her airway became more irritated than it already was. She was already on IV antibiotics and continued those for a few weeks after the bronch; and evenutally her cough decreased and went away. She has been on an oral prophylactic antibiotic since that time.

 

[Mistyjo]

I'm so sorry your son has to go thru this. I don't blame him for fighting it. As far as bronchs goes my daughter hasn't had one but both of my parents did. My Mom had pulomonary fibrosis w/ chronic pnuemonia and had bronchs and surgeries done to try to clean her lungs out but it didn't work. After one bronch her oxygen dropped for a few days and she was worse. It took her a while to recover from it. When my Dad had one he was better after for a few days, but his pnuemonia was so bad he ended up on the vent. I haven't had good experiences with bronchs. I know the cf specialist mentioned doing one for my daughter at some point but I'm going to put it off as long as i can.

 

[Mistyjo]

I'm so sorry your son has to go thru this. I don't blame him for fighting it. As far as bronchs goes my daughter hasn't had one but both of my parents did. My Mom had pulomonary fibrosis w/ chronic pnuemonia and had bronchs and surgeries done to try to clean her lungs out but it didn't work. After one bronch her oxygen dropped for a few days and she was worse. It took her a while to recover from it. When my Dad had one he was better after for a few days, but his pnuemonia was so bad he ended up on the vent. I haven't had good experiences with bronchs. I know the cf specialist mentioned doing one for my daughter at some point but I'm going to put it off as long as i can.