Tubes Out!

Bobby was successfully extubated this morning. He had his bronchoscopy around 7:30 am and they found some swelling and some aggravation to the vocal cords. The latter can cause scarring, which is obviously not good for the voice box, so Bobby gets some more antibiotics and a weekend hooked up to a the cpap machine. The cpap is an alternative to a nasal cannula - it provides him with oxygen support, and it blows pressure into his airway, keeping things clear so they can heal. He'll also get steroids to reduce the swelling. In a few weeks they will recheck the vocal cords - if they have scarred it will mean another surgery.

We got the results back from his MRI as well. This was to check to see if his crossed eye was a symptom of De Morsier syndrome, a horrible disease that impacts the central line of the brain, including the optic nerve and pituitary gland. He doesn't have that. His opthamologist also told us that he was a bit concerned that he might have had a tumor (glad that didn't come out in the original diagnosis). It turns out that Bobby has congenital nystagmus - it's what Dr. Yoon terms as being 'like a mole on his butt. He just has it because he has it." Of course they want to do surgery to correct. The correction will give Bobby a chance to develop stereo vision which will give him depth perception. I have a lazy eye and no depth perception, so it's not the end of the world...but it's just an outpatient surgery so we'll think about doing it. It can wait a few months, at least.

Finally, the ENT put in ear tubes while Bobby was sedated for the bronchoscopy. He had fluid in both ears. Bobby passed his newborn hearing test, but so far he hasn't passed another auditory test. He's had the wax cleaned out of his ears and the tubes put in, so we'll try the auditory test again in a couple of weeks. We know he hears - that's very apparent. But if he does have hearing loss, we want to get him a hearing aid as soon as possible to prevent speech delays.

It's been quite a day of mostly very good news. The weekend will hopefully be quiet as we give that airway time to rest. Monday we start work on feeds.

I used to think that Down Syndrome was just about developmental delays. I had no idea about the medical challenges that accompanied them. It takes a very strong heart to withstand all of this. I feel very blessed to have such a brave boy as my son.