We went to visit Dr. E, and he did a scope (up the nose=seriously no fun). He had a terrible, terrible time. Travis held him, and i suctioned nearly constantly. Doc cleaned out his crummy ear, and to our advantage, it wasn't "that bad". LOL, that's as good as we get.
The scope showed he's pooling his secretions (not swallowing very well) and some residual swelling, but really, not a whole lot. He came out w/ plans for a video swallow study, which we were going to do anyway. Now that i write this, i'm wondering if he saw something he didn't want to see... We'd been bringing this up since August. Things have gotten better and worse a handful of times between now and then. We'll save that email for tomorrow. Ugh.
Dr. E hopes there's a macrocyst by his temple, and we'll have an ultrasound done next time we go down. Other than that, it depends on what we can find out about his mouth... So, we went to the nearby UC hospital for a consult w/ a new doc. He can't tell us anything straight away, but at least got an idea of what imaging he needs done (x-rays? mri's? ct? mentioned sedation/anesthesia).
Friday, January 27, 2012
Sunday, January 22, 2012
Silly boy
Channeling a Richard Simmons headband meets Superhero bib-cape fashion... And being super cute while doing it!
Thursday, January 19, 2012
Said crummies landed us in the ER last night around midnight. He was coughing bright red blood out of his trach, and believe it or not, we weren't comfortable with that! LOL... There wasn't anything they could do, so we went home. Better safe than sorry... very sleepy now, though. Props to the Lutheran ER for getting us in and out in an hour! The doc was very helpful. He's doing better this morning, normal "cold" symptoms, no fever, bleeding or 02 crazy sats overnight! We're on 2 antibiotics and hoping we stay out of pneumonia land!
We appreciated your thoughts and prayers last night, and anytime!
We appreciated your thoughts and prayers last night, and anytime!
Wednesday, January 18, 2012
The crummies...
We've been dealing with some more serious than average crummies for the last two days. Bronchitis, sinus infection, fever... no pneumonia as of this afternoon. Hoping he can get rid of this hospital free.
Monday, January 16, 2012
Friday, January 13, 2012
The cold that never ends...
Things have been going alright over here. Personally, i'm not real enthusiastic about the snow, but it's what you get (and at least it waited this long!)
Micah has been battling a cold for almost a month now! Everytime he gets a little better, he seems to catch another bug and go downhill. Might need to have a hiatus from his therapy at the hospital so he can stop catching every bug in town! Other than that, the poor guy hasn't been out that much since his surgery. We go to Cincinnati at the end of the month to see ENT and oral/maxillofacial surgery. if i had to guess that means we'll probably return shortly after to get whatever imaging the surgeon might want. Hopefully after that we won't have to go down much until the weather improves!
Despite M's cold, he hasn't slowed down much. Never does, does he?
Micah has been battling a cold for almost a month now! Everytime he gets a little better, he seems to catch another bug and go downhill. Might need to have a hiatus from his therapy at the hospital so he can stop catching every bug in town! Other than that, the poor guy hasn't been out that much since his surgery. We go to Cincinnati at the end of the month to see ENT and oral/maxillofacial surgery. if i had to guess that means we'll probably return shortly after to get whatever imaging the surgeon might want. Hopefully after that we won't have to go down much until the weather improves!
Despite M's cold, he hasn't slowed down much. Never does, does he?
Thursday, January 5, 2012
A more substantial post
Now that I have a fully functioning keyboard... It's less irritating to post.
Since surgery, Micah has had a cold (don't get me started where it came from, trust me). It'll be 3 weeks tomorrow since his surgery. Airway work+cold is not the finest combo. Makes me want to never take him out again.
Today I got a call from the doctors office that our ENT wants us to see regarding Micah's jaw issues. Unfortunately, it's not at Cincinnati Childrens. :( It's practically next door, at University of Cincinnati Hospital. That hospital is... unique. They are very good at a lot of things, one of which being the prenatal/high risk care I received as part of the fetal care program. They're great with trauma and a whole lot of other things, from what I hear... It's also a very intimidating hospital. It's in a bad neighborhood, and get a lot of the shootings and whatnot. Much more dramatic than what I prefer. But, apparently M's ENT thinks highly enough of this guy to send us there, so there we will go. And to boot, we got in on the same day we'll already be down there to see Dr. E at the end of the month... that's a WIN in my book! Hopefully we can get on the path to knowing what's wrong with the poor kids jaw. (In short, it opens probably 1/3-1/2 of what it should, making lots of things rather difficult, most importantly, the surgery necessary to clean up his airway). IF this doc, Dr. K feels like surgery is necessary and is beyond his scope (which isn't out of the question with his LM involvement), we may have to travel to see a team that has a oral-maxillofacial surgeon on their vascular anomaly team (say that 3 times fast...LOL). Somewhere you know, like Boston (dramatic sigh).
In the meantime, we have 3 more weeks til those two appointments. Looking at scheduling another swallow study because... something ain't right. Still. We had a few days that were looking decent, but now, not so much. Hoping it's a short term thing exacerbated by the cold.
Since surgery, Micah has had a cold (don't get me started where it came from, trust me). It'll be 3 weeks tomorrow since his surgery. Airway work+cold is not the finest combo. Makes me want to never take him out again.
Today I got a call from the doctors office that our ENT wants us to see regarding Micah's jaw issues. Unfortunately, it's not at Cincinnati Childrens. :( It's practically next door, at University of Cincinnati Hospital. That hospital is... unique. They are very good at a lot of things, one of which being the prenatal/high risk care I received as part of the fetal care program. They're great with trauma and a whole lot of other things, from what I hear... It's also a very intimidating hospital. It's in a bad neighborhood, and get a lot of the shootings and whatnot. Much more dramatic than what I prefer. But, apparently M's ENT thinks highly enough of this guy to send us there, so there we will go. And to boot, we got in on the same day we'll already be down there to see Dr. E at the end of the month... that's a WIN in my book! Hopefully we can get on the path to knowing what's wrong with the poor kids jaw. (In short, it opens probably 1/3-1/2 of what it should, making lots of things rather difficult, most importantly, the surgery necessary to clean up his airway). IF this doc, Dr. K feels like surgery is necessary and is beyond his scope (which isn't out of the question with his LM involvement), we may have to travel to see a team that has a oral-maxillofacial surgeon on their vascular anomaly team (say that 3 times fast...LOL). Somewhere you know, like Boston (dramatic sigh).
In the meantime, we have 3 more weeks til those two appointments. Looking at scheduling another swallow study because... something ain't right. Still. We had a few days that were looking decent, but now, not so much. Hoping it's a short term thing exacerbated by the cold.
Monday, January 2, 2012
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