View Full Version : Discouraging News

02-18-2010, 02:58 PM
Jorie had her first bronch today since her original trach surgery a year and a half ago. Her airway looks good, although the ENT had difficulty getting the camera into the airway through her mouth because of its small size and high tone. We saw in the photos that she is pooling her secretions just above her epiglottis - and the Dr. said that she in fact had to force her way under the epiglottis instead of being able to stimulate it upwards to view beyond...which tells us that she has tone issues there as well. This is certainly a contributing factor to the poor (or possibly non-existent) swallow, and the constant pooling of secretions keeps the tissue in that portion of her airway irritated.

If the tone issues there do not improve, there will be no chance of getting the trach out, because of the risk of aspiration. What can we do to help things along? Well, nothing, really. Encourage the use of the PMV. We are starting with a new ST next week who supposedly is one of the best in the state (at least according to EI) for feeding issues, but we won't be cleared for any oral feedings at all with things as they are. None of this is really a big surprise, but difficult to hear nonetheless after the Dr. has gotten a good view and can see for sure what is happening in there. Feeling bummed.

02-18-2010, 04:00 PM
I am sorry to hear that. I don't have any experience in the area, but so far all of our bronchs have been a major let down.

02-18-2010, 06:01 PM
That is what Evan is dealing with as well. It is a major issue for him because up untill now he ate like everyone else. Now at 13 years old he is no longer able to eat. His depression is a major factor in our everyday lives. Also because of the pooling he aspirates his own saliva. If you figure out a way to help this issue please pass it on to me.

02-18-2010, 07:33 PM
I'm sorry to hear such disappointing news ::hugs::

02-18-2010, 08:11 PM
Sorry you got such a bad report. Hope you can find someone who can figure out how to make an improvement.

My little figther
02-19-2010, 07:33 AM
I am so sorry to hear. Keep strong as I am sure you are

02-19-2010, 08:19 AM
Sorry to hear the scope didnt give you good news..hopefully something can be done to help Jorie in the future & maybe growth may help also :hug:

02-19-2010, 08:26 AM
Sorry to hear your news:(

02-19-2010, 08:37 AM
Major :hug:s :(