[tri-med] Refoel update

Hi everyone. Refoel was released from the hospital twelve days ago and my email 
at home is too slow. Unfortunately we are back, this time at PICU. He should be 
released tommorrow. He seemed to have some kind of infection, but they have him 
on anitbiotics and he is doing fine.

We are covered for 18 hours of nursing but we never get that much. We are lucky 
if the agecy gives us 16 hours. My wife and I knew how to suction and bag etc. 
He is breathing on his own and does not need oxygen. Since he had a trach put 
in, we have a nebulizer machine to keep his lungs moist. He was doing well for 
a while but had to go back to the hospital.

I was speaking with Dr. Carey and we seems to agree that many parents do not 
want to go as far as a trach. It is amazing. The trach was the simplest 
procedure but by far the most beneficial. Refoel could not last for long 
breathing through his mouth. He constantly needed to be reintebated. The 
doctors kept on talking about central apneas. My feeling was that he had 
obstructions and that was the problem. He has a cleft palate and lip. As it 
turned out, when an ENT finailly looked at him in NICU, he had paralyzed vocal 
cords. Well, after the trach was put in, he was extabated and has not been 
reintebated. He did not have any apneas until last this recent event, and even 
now, he still is not on the respirator. So I do not know why the trach is 
considered so radical when it is so beneficial. It provides these children with 
a clear airway. The trach should be encouraged, bot made as the limit of 
intervention.

I have a question. The doctors keep on talking about the apneas getting worse 
with age. It seems from my conversations with parents, that the opposite is 
true. I feel that Refoel's apneas are ussally due to obstructions. This recent 
epoisode was due to excessive secretions. When it becomes hard to breath, he 
gives up. Are the doctors right?
sincerely, Arthur



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