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| Letter from Dr Weese-Mayer in Chicago after Landon's week long evaluation to see if he was a candidate for Pacer Surgery |
Little Landon Knight
Anyone know anything about Diaphragm Pacers?
This is a surgery Landon has waited almost 5 years for but because of insurance, we are still waiting. Landon was tested and is an excellent candidate for this surgery. Since he lives 24/7 on a ventilator, there are long term effects such as right-sided heart failure, constant upper respiratory infections, the closing of his upper airways due to non-use, and much, much more! Diagragm Pacers are placed inside the body and in turn will shock his phrenic nerve to stimulate a breath on his own by sending the message to breathe to the brain! This not only strengthens the body as it helps you to breath on your own, but you are breathing naturally, not air being forced in by a machine! Long term costs are much much less than that of total ventilator dependency. Helps food taste better, airways to open, helps you to be able to vocalize which is something thats very difficult for a person with a trach, lessens respiratory infection by allows some people to have the trach removed! These are our goals for Landon, as we continue the fight each day for him to receive tis life changing surgery...PLEASE JOIN US! Please help us make this happen for him. This will allow him to be more independent, to go to the potty alone, get a drink from the kitchen, a toy from his playroom, play outside in the yard like a kid should do, all without a 3ft circuit of tubes coming from his neck being held on around his neck by velcrow and cloth ties, all going to a heavy, bulky machine running off of batteries only to give you short time before forced to come back inside and be pinned in a 3ft radius plugged into a wall outlet! There are better ways to VENTILATE! Less invasive, cheaper monthly and long-term, but most importantly the health affects and the benefits in Landons QUALITY OF LIFE....
Join us in finding a way to give Landon this chance to live a better healthier, easier life...
and Join us to improve the awareness of his diseases to improve research findings to help find a cure, and possibly save many lives!
People with CCHS have a chance to live a normal life expectancy IF MANAGED PROPERLY. No one should be forced to move from state to state just to receive the needed monitors to live in the comfort of their own home with family versus living in a high cost ICU Room! Families are willing to do ALL THE WORK, but we need help in the costs of providing this opportunity to our children!
This is a surgery Landon has waited almost 5 years for but because of insurance, we are still waiting. Landon was tested and is an excellent candidate for this surgery. Since he lives 24/7 on a ventilator, there are long term effects such as right-sided heart failure, constant upper respiratory infections, the closing of his upper airways due to non-use, and much, much more! Diagragm Pacers are placed inside the body and in turn will shock his phrenic nerve to stimulate a breath on his own by sending the message to breathe to the brain! This not only strengthens the body as it helps you to breath on your own, but you are breathing naturally, not air being forced in by a machine! Long term costs are much much less than that of total ventilator dependency. Helps food taste better, airways to open, helps you to be able to vocalize which is something thats very difficult for a person with a trach, lessens respiratory infection by allows some people to have the trach removed! These are our goals for Landon, as we continue the fight each day for him to receive tis life changing surgery...PLEASE JOIN US! Please help us make this happen for him. This will allow him to be more independent, to go to the potty alone, get a drink from the kitchen, a toy from his playroom, play outside in the yard like a kid should do, all without a 3ft circuit of tubes coming from his neck being held on around his neck by velcrow and cloth ties, all going to a heavy, bulky machine running off of batteries only to give you short time before forced to come back inside and be pinned in a 3ft radius plugged into a wall outlet! There are better ways to VENTILATE! Less invasive, cheaper monthly and long-term, but most importantly the health affects and the benefits in Landons QUALITY OF LIFE....
Join us in finding a way to give Landon this chance to live a better healthier, easier life...
and Join us to improve the awareness of his diseases to improve research findings to help find a cure, and possibly save many lives!
People with CCHS have a chance to live a normal life expectancy IF MANAGED PROPERLY. No one should be forced to move from state to state just to receive the needed monitors to live in the comfort of their own home with family versus living in a high cost ICU Room! Families are willing to do ALL THE WORK, but we need help in the costs of providing this opportunity to our children!
