Samuel and BB got to spend nearly three days at MUSC - this past Monday, Tuesday, and Wednesday. No worries though, all is GREAT! We were there for a surgery, some tests, and lots of observation... when you spend that much time in the hospital, you get lots of info and feedback, which is nice. I'm pretty sure folks thought I was crazy when they first saw me walking through the halls, I was on cloud 9 even though Samuel was an inpatient. But once I explained the circumstances, it was smiles all around!
The first appointment was a bronchoscopy on Monday morning. A bronch is a chance to check out the airway, among other things. We were lucky to have the first appointment, which meant we had to leave home at 4:30am, but that was the only horrible news all day :) Plus, Brooke was there for the weekend so no one else had to wake up at 4:30 to come watch George and Olivia. And wouldn't you know it, my little girl who is nervous of anyone new, and I mean anyone, thought Brooke was the coolest big kid she had ever met! So waking up Monday morning without mama or daddy was okay. Whew.
Back to Samuel... the bronch went really well! Things we discovered:
- Dr. D did a surgical procedure to remove some granulation tissue - kind of like scar tissue - inside Samuel's neck. It forms around the stoma (hole in his neck) on the inside. We knew there would be some, but our assumptions were correct in that there wasn't a lot. The doctor removed what he could, and will remove the rest next time because it was a bit too fibrous and thick.
- Dr. D also downsized the trache again! From 4.0 to 3.5 last month (click here), and from 3.5 to 3.0 this time. Um, 3.0 is the smallest trache there is! Crazy part is that our backup trache, which is supposed to be one size smaller than what's in his neck currently, is now a little ET tube... which isn't even an actual trache, just a skinny little tube!
- Samuel's vocal chords look okay. In June 2009, both vocal chords were unresponsive, and this time only the left one was unresponsive. I think there's a more technical word than unresponsive, but that's the way my brain comprehends it :) If vocal chords are unresponsive it can cause issues with eating, swallowing and speaking, but not breathing... it's amazing what you're thankful for :) The good news is that the test is a bit inconclusive because vocal chords can be unresponsive due to sedation, and actually be fine when Samuel's awake. So in a few weeks the doc is going to sneak a flexible scope down there to check them out while Samuel's awake. Agh! But, then we'll know for sure! The other good news is that if there is damage, it might not be too bad... our ENT heard him talk, which can sound really raspy when there is damage, and thought he sounded great. There could be come compensation going on, but our fingers are crossed that both chords are fine!
Due to a great bronch, we stayed in the hospital until Wednesday to be observed while Samuel's trache was CAPPED!!! That is exactly what it sounds like... there was a cap put on the end of Samuel's trache :) It makes him breathe out AND IN through his mouth and nose! With the passy muir (speaking valve), he could still breathe in through his neck/stoma. CRAZY! This is the first time since June 2009 that Samuel has had to breathe in through is mouth and nose! He did need a bit of extra oxygen on Monday afternoon, which came through a nasal cannula and not the trache, but since then hasn't needed any extra o's.
I know I've said this before, but wow... writing this stuff down makes it so real. YEA!!! Our guy is making HUGE progress!!!
Our new everyday schedule is trache collar, which provides extra oxygen and humidity, during nap and at night, and capped any time he is not in bed. Samuel is capped an average of 10 hours per day! And an early CO2 test showed numbers lower than they have been, possibly ever.
I have absolutely no idea how to end this post. I have no idea how to express what we're feeling! We are overjoyed, we are hopeful, and we are incredibly thankful :) Those words feel so inadequate...
The first appointment was a bronchoscopy on Monday morning. A bronch is a chance to check out the airway, among other things. We were lucky to have the first appointment, which meant we had to leave home at 4:30am, but that was the only horrible news all day :) Plus, Brooke was there for the weekend so no one else had to wake up at 4:30 to come watch George and Olivia. And wouldn't you know it, my little girl who is nervous of anyone new, and I mean anyone, thought Brooke was the coolest big kid she had ever met! So waking up Monday morning without mama or daddy was okay. Whew.
Back to Samuel... the bronch went really well! Things we discovered:
- Dr. D did a surgical procedure to remove some granulation tissue - kind of like scar tissue - inside Samuel's neck. It forms around the stoma (hole in his neck) on the inside. We knew there would be some, but our assumptions were correct in that there wasn't a lot. The doctor removed what he could, and will remove the rest next time because it was a bit too fibrous and thick.
- Dr. D also downsized the trache again! From 4.0 to 3.5 last month (click here), and from 3.5 to 3.0 this time. Um, 3.0 is the smallest trache there is! Crazy part is that our backup trache, which is supposed to be one size smaller than what's in his neck currently, is now a little ET tube... which isn't even an actual trache, just a skinny little tube!
- Samuel's vocal chords look okay. In June 2009, both vocal chords were unresponsive, and this time only the left one was unresponsive. I think there's a more technical word than unresponsive, but that's the way my brain comprehends it :) If vocal chords are unresponsive it can cause issues with eating, swallowing and speaking, but not breathing... it's amazing what you're thankful for :) The good news is that the test is a bit inconclusive because vocal chords can be unresponsive due to sedation, and actually be fine when Samuel's awake. So in a few weeks the doc is going to sneak a flexible scope down there to check them out while Samuel's awake. Agh! But, then we'll know for sure! The other good news is that if there is damage, it might not be too bad... our ENT heard him talk, which can sound really raspy when there is damage, and thought he sounded great. There could be come compensation going on, but our fingers are crossed that both chords are fine!
Due to a great bronch, we stayed in the hospital until Wednesday to be observed while Samuel's trache was CAPPED!!! That is exactly what it sounds like... there was a cap put on the end of Samuel's trache :) It makes him breathe out AND IN through his mouth and nose! With the passy muir (speaking valve), he could still breathe in through his neck/stoma. CRAZY! This is the first time since June 2009 that Samuel has had to breathe in through is mouth and nose! He did need a bit of extra oxygen on Monday afternoon, which came through a nasal cannula and not the trache, but since then hasn't needed any extra o's.
I know I've said this before, but wow... writing this stuff down makes it so real. YEA!!! Our guy is making HUGE progress!!!
Our new everyday schedule is trache collar, which provides extra oxygen and humidity, during nap and at night, and capped any time he is not in bed. Samuel is capped an average of 10 hours per day! And an early CO2 test showed numbers lower than they have been, possibly ever.
I have absolutely no idea how to end this post. I have no idea how to express what we're feeling! We are overjoyed, we are hopeful, and we are incredibly thankful :) Those words feel so inadequate...
Seriously?! You woke me up early to come here?
Wait a second, those ceiling tiles look vaguely familiar...
(Pre-surgery, wearing his passy muir.)
The happiest post-op boy you ever did see :)
(Wearing his HME and extra oxygen.)
Since we were there for the next few days mainly to be observed, we got permission to go outside for a bit - yea! We sat on a sheet in the courtyard/horseshoe outside the children's hospital mostly, but did take a walk to see the water :) Of course, going outside meant bringing along anything we might need in case of an emergency... suction, sat monitor hooked up at all times, nasal cannula, oxygen, ambu bag, extra trache's etc. BB got quite the workout!
Close up and capped :)
You can't even see the little white cap on his trache under all those smiley chins!
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