Sunday, July 18, 2010


Sorry for the lack of an update. Lilli is overall doing quite well and is being her typical self where at moments you know something is “going on” on at other times she seems 100% normal. So here is the “prognosis”…. Plastic Bronchitis!
“Plastic bronchitis is a condition in which large, pale tan, bronchial casts with rubber-like consistency develop in the tracheobronchial tree and cause airway obstruction. Management of this distressing situation is difficult with only palliative options being available, such as repeated bronchoscopies, inhaled heparin, tissue plasminogen activator, inhaled bronchodilators, or azithromycin”

So we are in trouble… bottom line. There is no “cure” for this and the hopes are that we can control it with nebulizers and medications. This suggests underlying issues with either her blood flow (causing pressure) and/or her lymphatic system.

For now the plan is to “wait and see” how she does over the next few days. We will possibly go home with the nebulizers and then come back in about a week for a heart cath. Or if she keeps being a stinker we will stay until the cath. We did get moved to the floor today so that’s a good step.

It’s really FREAKY to think that at any moment your child could obstruct her airway! Below is a picture of the “cast” Lilli coughed up and it’s insane… it looks like a sea creature! We are so depressed as we know this will never “go away” and at any moment we will be rushing into the ER and it will just keep happening over and over again. They may want to put a “stint” in her pulmonary artery but that won’t last long and we will ultimately just be delaying the inevitable. But that’s jumping ahead of ourselves so for now we are attempting to just “wait and see”.