Posterior Laryngeal Cleft
That looks like a bunch of medical jargon- basically- the back of the throat isn't formed like it should be.
There are three different stages, I, II, III & IV- III being the worst. (powerpoint)
Caden will be under sedation, but breathing on his own and they will look at his throat to see how everything looks. If they see that he has the cleft- they will fill the extra space in with a temporary gel film. This film will last 2-3 months. In that time they will make sure that he tolerates the gap being filled (as it should be), and then he will have a permanent surgery to have the space filled. This is the suregry that worries me most, and that I have yet to to start researching because just writing about it makes me quiver. Preliminarily, I *think* he will have to be intubated a day or so just because of what they are doing (sewing his airway up)- and that scares me in ways that there just aren't words for. I am not even going to look at that mountain until I know it is one that we have to climb.
I found a study that had 21 children- with ages 15 days to 6 years, the average age being 21 months (he is 20 months now)- and all of their initial history was right along what Caden has gone through- dysphagia (trouble swallowing), respiratory distress, GER (reflux), G-tube, poor weight gain, difficulties with thin liquids, etc. At a glance- it looks like this could finally be an answer to what no one seems to be able to answer!
This is a rare condition, 1 in 10-20,000 babies are born with it, and it is something that happens when a baby is being formed in the mothers womb. There is no real known cause, and not enough research can link it hereditarily. Boys have it more often than girls 5:3, and the only way to see it is through a scope.
So this scope is scheduled for early September, if they do the gel film, they will have to keep him overnight and monitor him- since they will have messed with his airway. If they don't find the cleft- then we are back at square one and we go to the GI.
Regardless, we will be at the GI the following week. I anticipate that the GI will at some point want a scope done as well. I initially wanted the scopes to coincide with one another- and the ENT said he had no problem, but since Caden is a new patient with the GI doctor, the timing of it all just didn't work out.
Another little tidbit for thought is that should he get the gel film, I would like them to try and have the permanent surgery done by the end of the year, mainly for insurance reasons, and not wanting to roll into another deductible year, which will put us at another Christmas or New Years in the hospital.
The things that you take for granted, something as simple as putting a fork to your mouth and eating!!!
There are three different stages, I, II, III & IV- III being the worst. (powerpoint)
Caden will be under sedation, but breathing on his own and they will look at his throat to see how everything looks. If they see that he has the cleft- they will fill the extra space in with a temporary gel film. This film will last 2-3 months. In that time they will make sure that he tolerates the gap being filled (as it should be), and then he will have a permanent surgery to have the space filled. This is the suregry that worries me most, and that I have yet to to start researching because just writing about it makes me quiver. Preliminarily, I *think* he will have to be intubated a day or so just because of what they are doing (sewing his airway up)- and that scares me in ways that there just aren't words for. I am not even going to look at that mountain until I know it is one that we have to climb.
I found a study that had 21 children- with ages 15 days to 6 years, the average age being 21 months (he is 20 months now)- and all of their initial history was right along what Caden has gone through- dysphagia (trouble swallowing), respiratory distress, GER (reflux), G-tube, poor weight gain, difficulties with thin liquids, etc. At a glance- it looks like this could finally be an answer to what no one seems to be able to answer!
This is a rare condition, 1 in 10-20,000 babies are born with it, and it is something that happens when a baby is being formed in the mothers womb. There is no real known cause, and not enough research can link it hereditarily. Boys have it more often than girls 5:3, and the only way to see it is through a scope.
So this scope is scheduled for early September, if they do the gel film, they will have to keep him overnight and monitor him- since they will have messed with his airway. If they don't find the cleft- then we are back at square one and we go to the GI.
Regardless, we will be at the GI the following week. I anticipate that the GI will at some point want a scope done as well. I initially wanted the scopes to coincide with one another- and the ENT said he had no problem, but since Caden is a new patient with the GI doctor, the timing of it all just didn't work out.
Another little tidbit for thought is that should he get the gel film, I would like them to try and have the permanent surgery done by the end of the year, mainly for insurance reasons, and not wanting to roll into another deductible year, which will put us at another Christmas or New Years in the hospital.
The things that you take for granted, something as simple as putting a fork to your mouth and eating!!!
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