Rec'd a call from Timothy's ear dr this morning (about 5 minutes before I should have been walking out the door for co-op -- lovely timing). It appears that once they pulled the x-ray film of T's airway fluoroscopy from last Friday, that there is something there that needs attention, although it could still turn out to be something he can outgrow. Our airways are made out of cartilage like our ears and the tips of our noses....according to the x-ray, T's airway is starting to calcify. That is, it's starting to turn hard, like bone. While it doesn't appear to be causing any serious issues as of now, this is something that we must pay attention to. There are a handful of genetic disorders that cause cartilage to turn to bone. The only way to find out whether or not T has one of these disorders is to take him for genetic testing. They are supposed to be calling me in a day or 2 with an appointment to take him for that. If he does not have one of these disorders, then they will watch him carefully as he continues to grow to see if he outgrows this. If it begins to worsen or affect his breathing, then they will need to intervene surgically. He said one of the common ways they fix something like this is to put a little slit in the airway, remove the calcified cartilage, and replace it with healthy cartilage from a different part of the body. However, if he has one of these disorders, then they would have to pursue something else as they wouldn't want to put cartilage there that would eventually harden (does that make sense?). What that would entail, he did not say. He did end on this note: "I'm not telling you that there's something horribly wrong with your son. What I am telling you is that we found something unusual and we need to pursue it to make sure we're not dealing with something severe. I wouldn't loose any sleep over this. I think he's going to be just fine." As of now, his tube surgery is still scheduled for 4/25 at which time they will still do a bronchoscopy. One of the reasons for doing that now is to see just how bad his cartilage is calcifying and to determine future treatment, if necessary. Unless we get into the geneticist and have test results by that date (highly unlikely), then they will not be doing anything to try and correct this problem on that date until they know for sure what we're up against (or not up against).
On a totally different note, this blog that I've been following (cfhusband.blogspot.com) about a woman named Tricia who has cystic fibrosis and delivered a premature baby at 25 weeks gestation in January -- she endured a double lung transplant during the wee hours of the morning today. As of this writing, she is out of surgery and in ICU but obviously has a long road ahead of her. I know you don't know them -- I don't even "know" them even though I've been faithfully reading their blog every day -- please join me in praying for them.