I've been staring at this page for a few days now trying to figure out how I would write this post. I'm still not 100% sure where or how to start so I'm just going to type and see what comes out. As most of you know for the last month or so we've been taking Colby in to our family doctor to find out why he seems to struggle with breathing and why he makes so much noise when he breathes. We've recently learned that it is because of a condition called
Laryngomalacia (it's said exactly like it's spelt).
CincinnatiChildrens.org says, "
Laryngomalacia is best described as floppy tissue (epiglottis and
arytenoid cartilages) above the vocal cords that falls into the airway when a child breaths in."
As we learn more about this I wonder if
Riann didn't have the same condition when she was born. Because of this I don't worry too much about things getting any worse than they are now, however, a lot of the sites that I've read say that there is a chance things can worsen at four to eight months, that worries me just a little.
Riann was much quieter than Colby's is so I never pursed it when the doctor's told me it wasn't too much to worry about. I toke her in a few times thinking she was
congested but was always told that her airways were clear, even though she never sounded like it. I figured the doctors would tell me if there was a problem and just nicknamed her our little Pug.
This time around I've watched Colby struggle to breath and I'm grateful for a doctor who has taken the time to listen to me and take my concerns seriously. I'm grateful that nothing was seriously wrong with
Riann as we learn more about everything with Colby. When we first brought Colby in our doctor took the time to watch him and didn't just cancel out the sounds Colby was making when he checked over the other general things doctors check for. Because of this we have been able to find out quickly what we're dealing with so we can quickly treat it. It has also given me peace of mind because now I can do my own research and find accurate information and have some validation that I'm not stressing out over nothing.
We have recently been down to Primary Children's in Salt Lake City and have talked to the pediatric
ENT (Ear, Nose and Throat) doctor out there. Based on what he's observed he feels like Colby is not bad enough to
warrant immediate surgery but struggles enough that he wants to try a few more test. We have the option to forgo the tests and go straight into surgery but we're not sure that's the direction we want to go just yet. Our second option is to have Colby under go a sleep study. Where Colby isn't having too much trouble eating and is regularly gaining weight,
although it's not as much as they would like, the
ENT at Children's was on the fence about rushing us straight to the operating room. It's hard to say if Colby is not gaining weight because of the condition or if he will just be following the same pattern that
Riann is on and will just be really tall and lean. He's in the 95
th percentile for his height and between the 25
th and 50
th percentile for his weight. He has been gaining pretty
steadily but he didn't lost a ton after he was born so from his "take home" weight to the weight he's at now, it's not the growth they like to see in children his age. That being said he has still gained approximately three to four pounds in the two months since we've had him and he is
noticeably filling out. So overall he seems to be doing good.
Another reason the doctor out at Children's is concerned is because Colby is not sleeping as long as he should at night. Some nights he'll go a full six to eight hours but most of the time he does two, four hour stretches and then a smaller two hour stretch. I'm not 100% sure if he's waking up because I force him up because he's still in our room and I'm worried about him waking up Paul, who needs his sleep for his early classes at school, or if he's really waking up on his own. I wonder if we moved him out of our room if he'd sleep longer on a regular basis but the doctors have asked us to stay with him until we have more answers. I've thought about moving into a different room with him but we don't have a bed (or air mattress) for me to sleep on yet. One of the main questions the doctor asked us during our last appointment was, "Does he gasp for air at night?", I had to think back when he asked me that and I did remember a few times in the last month where he has paused and gasped. This is also another thing we wonder about. I didn't think twice about it when I noticed it because I just assumed it was due to his reflux, that he was spitting up while he was falling asleep. I was always
cautious and stayed close when he did it so I could
intervene if needed but he's always slept on his side so I wasn't too concerned about him
aspirating it. Now we are wondering if he's been doing this because of the
Laryngomalacia or if it was
in fact his reflux acting up at night, when his medicine starts to wear off. The
ENT doctor told us if the pausing and gasping is due to the reflux we are okay to wait it out and to keep treating the reflux with the medicine he is currently on. However, if he is pausing and gasping because of the condition we will have to do surgery because the condition could be causing sleep apnea and, just like in adults, sleep apnea can lead to high blood pressure and heart problems in children.
The hard part about this condition is that it's hard to pinpoint what leads to which symptoms. We are slowly learning with each test that he is doing good and we hope that if we do this sleep study we'll learn that we can bypass surgery. However, my mind has been put at ease if we do have to take the surgery route because it doesn't sound like it's too invasive. I would like to avoid putting him under for anything that we don't have to though.
All this being said I have no feelings that this is going to be worse than what they
describe on the various websites that I've read although it's not easy to simply think "it's not THAT bad" when you listen to him. I know we're doing better with it because when we went home for Christmas it bothered those who hadn't spent too much time with him much more than it bothered us but it is something that sits in the back of ours mind on a regular basis. It's a little weird to think that this morning I couldn't go back to sleep because I COULDN'T hear him breathing. There are periods of time where he breaths completely normal, especially if he gets his head in exactly the right position and I feel like I have to check on him more often when he does that, even though I know he's fine.
As we learn more I'll try to update more. I'm still not the type of Blogger I'd like to be but I was told by someone that most blogs are best written when you just write and not stress about how many pictures you have or if there's a point to what you're saying. It's about getting it down. I'm working on just getting it down more often, not just for you guys but for myself.
Thank you for listening, for those of you who still do.