Re: zach went to the dr. today, possible pneumonia again , /SArah

[Guest guest]

Do the antibiotics and see if you can get Zach put on a low dose of antibiotics for the winter. I hear your mother. He'll outgrow it! Zach is different! Your battle sounds like so many other battles we all had to fight with our docs. Max had pneumonia 3 times this year. Now, after the 3rd one she is finally on antibiotics every day. She gets Septra, also called Bactrim. 3 pneumonias have done their damage. She cannot be without 02 , is on a bipap at night etc et c etc etc.....I used to beg for antibiotics at the smallest indication of her getting sick. The pedi would not give it to me. Now that the respiratory and lung damage is done, everyone is just too happy to supply all the antibiotics she can handle.

Make sure Zach's sats do not drop much lower. Low sats can increase co2 levels in the body. Do you have an oxygen compressor at home? Can you monitor his sats at home with a pulse ox? And keep pushing for the pulmo appointment. the sooner the better. I am glad to hear you got the xoponex. Do you have The Vest? Or a cough assist machine? All good stuff to have to help Zach.

Hang in there.

best regards.

rosy

[Guest guest]

Do the antibiotics and see if you can get Zach put on a low dose of antibiotics for the winter. I hear your mother. He'll outgrow it! Zach is different! Your battle sounds like so many other battles we all had to fight with our docs. Max had pneumonia 3 times this year. Now, after the 3rd one she is finally on antibiotics every day. She gets Septra, also called Bactrim. 3 pneumonias have done their damage. She cannot be without 02 , is on a bipap at night etc et c etc etc.....I used to beg for antibiotics at the smallest indication of her getting sick. The pedi would not give it to me. Now that the respiratory and lung damage is done, everyone is just too happy to supply all the antibiotics she can handle.

Make sure Zach's sats do not drop much lower. Low sats can increase co2 levels in the body. Do you have an oxygen compressor at home? Can you monitor his sats at home with a pulse ox? And keep pushing for the pulmo appointment. the sooner the better. I am glad to hear you got the xoponex. Do you have The Vest? Or a cough assist machine? All good stuff to have to help Zach.

Hang in there.

best regards.

rosy

[Guest guest]

> Make sure Zach's sats do not drop much lower. Low sats can increase co2

> levels in the body. Do you have an oxygen compressor at home? Can you

monitor his

> sats at home with a pulse ox? And keep pushing for the pulmo appointment.

the

> sooner the better. I am glad to hear you got the xoponex. Do you have The

Vest?

> Or a cough assist machine?

Most of the time insurance will not pay for these things without valid reason.

Sats of 94-94% are normal--mine aren't better than that. Oxygen won't be paid

for without sats of 88% or lower. A vest can is usually not paid for without a

diagnosis like cystic fibrosis. These are all based upon cost. Oxygen

concentrators are about $2000, pulse oximeters are about $3500 (probes are

about $24 each), refills on oxygen tanks are about $15 each (for a couple of

hours), and vests are $16,000 to $25,000 each.

[Guest guest]

> Make sure Zach's sats do not drop much lower. Low sats can increase co2

> levels in the body. Do you have an oxygen compressor at home? Can you

monitor his

> sats at home with a pulse ox? And keep pushing for the pulmo appointment.

the

> sooner the better. I am glad to hear you got the xoponex. Do you have The

Vest?

> Or a cough assist machine?

Most of the time insurance will not pay for these things without valid reason.

Sats of 94-94% are normal--mine aren't better than that. Oxygen won't be paid

for without sats of 88% or lower. A vest can is usually not paid for without a

diagnosis like cystic fibrosis. These are all based upon cost. Oxygen

concentrators are about $2000, pulse oximeters are about $3500 (probes are

about $24 each), refills on oxygen tanks are about $15 each (for a couple of

hours), and vests are $16,000 to $25,000 each.

[Guest guest]

,

Audrey does not have a dx of cystic fiborsis, just plain old unspecified mito. However, her doctor told of her need for the vest due to her very low muscle tone and the inablity to get the crude out of her lungs. They approved her immediately. Her doctor is awesome by the way.

Kathy, grandma to Audrey, 3 years wrote:

> Make sure Zach's sats do not drop much lower. Low sats can increase co2 > levels in the body. Do you have an oxygen compressor at home? Can you monitor his > sats at home with a pulse ox? And keep pushing for the pulmo appointment. the > sooner the better. I am glad to hear you got the xoponex. Do you have The Vest? > Or a cough assist machine? Most of the time insurance will not pay for these things without valid reason. Sats of 94-94% are normal--mine aren't better than that. Oxygen won't be paid for without sats of 88% or lower. A vest can is usually not paid for without a diagnosis like cystic fibrosis. These are all based upon cost. Oxygen concentrators are about $2000, pulse oximeters are about $3500 (probes are about $24 each), refills on

oxygen tanks are about $15 each (for a couple of hours), and vests are $16,000 to $25,000 each.Please contact mito-owner with any problems or questions.

[Guest guest]

,

Audrey does not have a dx of cystic fiborsis, just plain old unspecified mito. However, her doctor told of her need for the vest due to her very low muscle tone and the inablity to get the crude out of her lungs. They approved her immediately. Her doctor is awesome by the way.

Kathy, grandma to Audrey, 3 years wrote:

> Make sure Zach's sats do not drop much lower. Low sats can increase co2 > levels in the body. Do you have an oxygen compressor at home? Can you monitor his > sats at home with a pulse ox? And keep pushing for the pulmo appointment. the > sooner the better. I am glad to hear you got the xoponex. Do you have The Vest? > Or a cough assist machine? Most of the time insurance will not pay for these things without valid reason. Sats of 94-94% are normal--mine aren't better than that. Oxygen won't be paid for without sats of 88% or lower. A vest can is usually not paid for without a diagnosis like cystic fibrosis. These are all based upon cost. Oxygen concentrators are about $2000, pulse oximeters are about $3500 (probes are about $24 each), refills on

oxygen tanks are about $15 each (for a couple of hours), and vests are $16,000 to $25,000 each.Please contact mito-owner with any problems or questions.