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How...?!? This is really overwhelming.
- Thread starter hmw
- Start date
Bit of an update...
We have definitely found more of a routine with this. Emily has been very cooperative with the IV's, which helps, and was great for her dressing change.
The neverending vest nebs vest nebs vest nebs vest nebs has been incredibly wearing though~ it seems like she barely finishes one session and she's starting another. It's made a difference, though. She is coughing less and getting some energy back. They have us doing Pulmozyme twice a day (which she's never done before) alternating with the HTS twice a day, so it's all helping, despite the gruel of it.
I cannot wait for her followup on Tuesday. I hope they will tell us that it's enough, she can come off. I have no idea what to expect in that regard. Things are better but she's not close to her baseline and still having some chest tightness/pain (although she has some of that as her baseline too on occasion.) They will want her pft's back up to normal before letting her off, too, but I am not sure what they will consider her normal to be.
We have definitely found more of a routine with this. Emily has been very cooperative with the IV's, which helps, and was great for her dressing change.
The neverending vest nebs vest nebs vest nebs vest nebs has been incredibly wearing though~ it seems like she barely finishes one session and she's starting another. It's made a difference, though. She is coughing less and getting some energy back. They have us doing Pulmozyme twice a day (which she's never done before) alternating with the HTS twice a day, so it's all helping, despite the gruel of it.
I cannot wait for her followup on Tuesday. I hope they will tell us that it's enough, she can come off. I have no idea what to expect in that regard. Things are better but she's not close to her baseline and still having some chest tightness/pain (although she has some of that as her baseline too on occasion.) They will want her pft's back up to normal before letting her off, too, but I am not sure what they will consider her normal to be.
Bit of an update...
We have definitely found more of a routine with this. Emily has been very cooperative with the IV's, which helps, and was great for her dressing change.
The neverending vest nebs vest nebs vest nebs vest nebs has been incredibly wearing though~ it seems like she barely finishes one session and she's starting another. It's made a difference, though. She is coughing less and getting some energy back. They have us doing Pulmozyme twice a day (which she's never done before) alternating with the HTS twice a day, so it's all helping, despite the gruel of it.
I cannot wait for her followup on Tuesday. I hope they will tell us that it's enough, she can come off. I have no idea what to expect in that regard. Things are better but she's not close to her baseline and still having some chest tightness/pain (although she has some of that as her baseline too on occasion.) They will want her pft's back up to normal before letting her off, too, but I am not sure what they will consider her normal to be.
We have definitely found more of a routine with this. Emily has been very cooperative with the IV's, which helps, and was great for her dressing change.
The neverending vest nebs vest nebs vest nebs vest nebs has been incredibly wearing though~ it seems like she barely finishes one session and she's starting another. It's made a difference, though. She is coughing less and getting some energy back. They have us doing Pulmozyme twice a day (which she's never done before) alternating with the HTS twice a day, so it's all helping, despite the gruel of it.
I cannot wait for her followup on Tuesday. I hope they will tell us that it's enough, she can come off. I have no idea what to expect in that regard. Things are better but she's not close to her baseline and still having some chest tightness/pain (although she has some of that as her baseline too on occasion.) They will want her pft's back up to normal before letting her off, too, but I am not sure what they will consider her normal to be.
Bit of an update...
<br />
<br />We have definitely found more of a routine with this. Emily has been very cooperative with the IV's, which helps, and was great for her dressing change.
<br />
<br />The neverending vest nebs vest nebs vest nebs vest nebs has been incredibly wearing though~ it seems like she barely finishes one session and she's starting another. It's made a difference, though. She is coughing less and getting some energy back. They have us doing Pulmozyme twice a day (which she's never done before) alternating with the HTS twice a day, so it's all helping, despite the gruel of it.
<br />
<br />I cannot wait for her followup on Tuesday. I hope they will tell us that it's enough, she can come off. I have no idea what to expect in that regard. Things are better but she's not close to her baseline and still having some chest tightness/pain (although she has some of that as her baseline too on occasion.) They will want her pft's back up to normal before letting her off, too, but I am not sure what they will consider her normal to be.
<br />
<br />We have definitely found more of a routine with this. Emily has been very cooperative with the IV's, which helps, and was great for her dressing change.
<br />
<br />The neverending vest nebs vest nebs vest nebs vest nebs has been incredibly wearing though~ it seems like she barely finishes one session and she's starting another. It's made a difference, though. She is coughing less and getting some energy back. They have us doing Pulmozyme twice a day (which she's never done before) alternating with the HTS twice a day, so it's all helping, despite the gruel of it.
<br />
<br />I cannot wait for her followup on Tuesday. I hope they will tell us that it's enough, she can come off. I have no idea what to expect in that regard. Things are better but she's not close to her baseline and still having some chest tightness/pain (although she has some of that as her baseline too on occasion.) They will want her pft's back up to normal before letting her off, too, but I am not sure what they will consider her normal to be.
Thanks Stacey. <img src="i/expressions/face-icon-small-smile.gif" border="0">
She had her followup appt yesterday... and we are continuing the IV's for another week. I can't say it was a surprise~ I knew she was still coughing a lot more than she should be, but it was disappointing. What I *was* surprised about was her pft's. Her small airways (fef25-75) looked much better than they were the day they admitted her, so that is good... but her fev1 was only up 2%. I expected a lot more than that! So we do another week, she has another followup... and we'll see how things look then.
She had her followup appt yesterday... and we are continuing the IV's for another week. I can't say it was a surprise~ I knew she was still coughing a lot more than she should be, but it was disappointing. What I *was* surprised about was her pft's. Her small airways (fef25-75) looked much better than they were the day they admitted her, so that is good... but her fev1 was only up 2%. I expected a lot more than that! So we do another week, she has another followup... and we'll see how things look then.
Thanks Stacey. <img src="i/expressions/face-icon-small-smile.gif" border="0">
She had her followup appt yesterday... and we are continuing the IV's for another week. I can't say it was a surprise~ I knew she was still coughing a lot more than she should be, but it was disappointing. What I *was* surprised about was her pft's. Her small airways (fef25-75) looked much better than they were the day they admitted her, so that is good... but her fev1 was only up 2%. I expected a lot more than that! So we do another week, she has another followup... and we'll see how things look then.
She had her followup appt yesterday... and we are continuing the IV's for another week. I can't say it was a surprise~ I knew she was still coughing a lot more than she should be, but it was disappointing. What I *was* surprised about was her pft's. Her small airways (fef25-75) looked much better than they were the day they admitted her, so that is good... but her fev1 was only up 2%. I expected a lot more than that! So we do another week, she has another followup... and we'll see how things look then.
Thanks Stacey. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />She had her followup appt yesterday... and we are continuing the IV's for another week. I can't say it was a surprise~ I knew she was still coughing a lot more than she should be, but it was disappointing. What I *was* surprised about was her pft's. Her small airways (fef25-75) looked much better than they were the day they admitted her, so that is good... but her fev1 was only up 2%. I expected a lot more than that! So we do another week, she has another followup... and we'll see how things look then.
<br />
<br />She had her followup appt yesterday... and we are continuing the IV's for another week. I can't say it was a surprise~ I knew she was still coughing a lot more than she should be, but it was disappointing. What I *was* surprised about was her pft's. Her small airways (fef25-75) looked much better than they were the day they admitted her, so that is good... but her fev1 was only up 2%. I expected a lot more than that! So we do another week, she has another followup... and we'll see how things look then.
The balls no matter what you put in them seem to take about an hour no way around it, personaly this is my ideal method of dealing with tobra. Cephtaz(or how ever its spelled) again should have play time in the dose's, I've always fuged the times on them hour hour late in the morning half hour early at night. Presto extra hour of sleep.. I'm assuming the G2 tube feeding at night is by pump?? Again all of her meds should be stable for at least 24-36 hours at room temp. I simply always pulled the next dose as I was setting up to start the current one. IV antibiotics are always rough at home, and if she isn't use to those meds may start seeing results at day 5, more then likely something closer to day 10. If she isn't feeling better by day 12 may want to consider doing another week.
I know its rough and I'm sure your a walking zombie, and it does get some what easyer as time goes on.
I know its rough and I'm sure your a walking zombie, and it does get some what easyer as time goes on.
The balls no matter what you put in them seem to take about an hour no way around it, personaly this is my ideal method of dealing with tobra. Cephtaz(or how ever its spelled) again should have play time in the dose's, I've always fuged the times on them hour hour late in the morning half hour early at night. Presto extra hour of sleep.. I'm assuming the G2 tube feeding at night is by pump?? Again all of her meds should be stable for at least 24-36 hours at room temp. I simply always pulled the next dose as I was setting up to start the current one. IV antibiotics are always rough at home, and if she isn't use to those meds may start seeing results at day 5, more then likely something closer to day 10. If she isn't feeling better by day 12 may want to consider doing another week.
I know its rough and I'm sure your a walking zombie, and it does get some what easyer as time goes on.
I know its rough and I'm sure your a walking zombie, and it does get some what easyer as time goes on.
The balls no matter what you put in them seem to take about an hour no way around it, personaly this is my ideal method of dealing with tobra. Cephtaz(or how ever its spelled) again should have play time in the dose's, I've always fuged the times on them hour hour late in the morning half hour early at night. Presto extra hour of sleep.. I'm assuming the G2 tube feeding at night is by pump?? Again all of her meds should be stable for at least 24-36 hours at room temp. I simply always pulled the next dose as I was setting up to start the current one. IV antibiotics are always rough at home, and if she isn't use to those meds may start seeing results at day 5, more then likely something closer to day 10. If she isn't feeling better by day 12 may want to consider doing another week.
<br />
<br />I know its rough and I'm sure your a walking zombie, and it does get some what easyer as time goes on.
<br />
<br />I know its rough and I'm sure your a walking zombie, and it does get some what easyer as time goes on.