Charlie's medical saga

He is such a sweet smiler.

I thought now would be a good time to write down an update about all of Charlie's health things as a lot of people have asked me about it lately.  I'll try to keep it as brief as possible, but it is all a bit confusing.

At Charlie's two month doctor's visit, his pediatrician noticed he was breathing very rapidly and noisily.  I had noticed this too, but not really thought anything of it.  She referred us to several specialists, who ordered several tests.  And since then, there have been more specialists, more tests, and few answers.  Here is a list of the specialists he's seen:

Ear/Nose/Throat

Cardiologist

Pulmonologist (lung doctor)

Geneticist

Opthomologist

He's a list of tests he's had done:

2 echocardiograms

skeletal survey (x-rays of his entire body)

2 blood tests to rule out genetic disorders (with a third on the horizon)

This is all we know at the moment:

The pulmonologist suspects that there is some sort of narrowing in his trachea which causes him to have trouble breathing.  The next step is to figure out 1. if the narrowing is dramatic enough to warrant surgery 2. if his trachea just grew in a narrow way or if there is something else squeezing it (his aorta, for instance).  In order to figure those two things out, Charlie will have a chest CT angiogram (scheduled for Oct 11), and a larynscopy/bronchoscopy (basically a camera down his throat) (November 8).  Both of these require him to be put under general anesthesia.  I really resisted any test requiring him to be put under, until a gentle, understanding and very Greek doctor convinced me that it was necessary.  In the meantime, he is supposed to be on a nebulizer, but the medical supply company and our insurance company can't seem to get their business together so I've spent many hours over the past couple of weeks trying to get them to work it out.  Thankfully, Charlie seems to be doing okay without it.  

We don't know if this is at all related to him being born a month early, but my understanding is probably not.  

Fun fact: the average human has 12 sets of ribs.  Charlie has 13 (which we found out through the x-ray).  Apparently this is sometimes a characteristic of Down's Syndrome, but Charlie does not have Down's, so it is just a little quirk.

I think that is pretty much all I know.  It's been an exhausting and stressful time, but we've been overall happy with the care from all the doctors at the children's hospital.  Lucy has been to more doctors waiting rooms than she bargained for, but I am finally understand that each appointment is probably going to take twice as long as I think it's going to, so I need to find someone to help out or watch her.  Please keep Charlie in your prayers, especially with these two tests coming up.  I'll try to keep you all updated, but feel free to ask me questions (it's been kind of a whirlwind and I may have left something out).