Tuesday, October 21, 2014

Latest Tests

First of all, how stinkin' cute is Colin in a hospital gown?

Those socks kill me, and lasted about 2.5 seconds.  So, we arrived at the hospital around 7:45am for a day full of tests.  I can't give you all the exact medical lingo for what he had done, but he had an MRI, a bronchoscopy, and pulmonary got in there too.  The MRI was done because his head is big, like, off the charts big, corrected and actual age.  He had an ultrasound done on his head a month or so ago and it showed some extra fluid in places, so the doc wanted an MRI. The MRI showed that there is some mild brain volume loss.  As soon as the doctor told me that, it sounded really scary, but she said the only problem that he MIGHT have in the future is with his gross motor skills.  Colin just might not be very coordinated.  I am just happy to have not heard the words hydrocephalus or tumor, which were the scary words that the neurologist used at our appointment a few weeks ago (yes, Colin has a LOT of appointments).  So, as much as I wanted there to be nothing wrong, we were happy that it was nothing major.  The bronch showed that his airway looks mostly good, a little narrow, and there is a slight possibility that he would need a surgery when they went to take the trach out, but we're hoping as he grows, the problem will fix itself.  Pulmonary said his lungs look good, except for some mild malacia in his right lung, which will also get better with time and nutrition (the two words I heard all the time at the beginning of this journey).  All in all, we were pleased with the results of the tests.  Unfortunately, the ENT doctor told us his trach won't come out before the winter, so we're probably looking at March.  The good news is, he has been rocking room air during the day so we will start capping his trach, which means he will have to breath in and out of his mouth and nose instead of through the trach.  These are all steps to getting the trach out, and we can't wait for that day, he will be so much safer.  That is all for now, I'll leave you with another picture of Colin in his gown, he was completely mesmerized by his IV and the board.


  1. Hello friend. Just wanted to say hi. I'm glad for the good news. :) Your little guy is so cute! Before being a parent I was pretty removed from kid-stuff and I couldn't even imagine what the last 11 months have been like for you guys. Now that I have Macy, I can't even imagine MORE how your "new normal" has changed your life. Wow. You guys are doing so well! Take care. Love you!

    1. Lisa! I can't tell you how happy I am to hear from you! Macy is gorgeous! Congratulations on becoming a mom! I would love to chat sometime and hear how you all have been. Miss you and love you!