Post by lucylou on Mar 10, 2016 10:32:15 GMT -5
While I'm awake but trapped in bed with a sick sleeping baby seems like a good time to post an update for anyone interested.
If you're not in the Facebook group, DS had a flare up a week or 2 ago requiring oxygen for a few days and we ACTUALLY GOT HIM TO WEAR IT! Amazing and something I didn't think would happen as relatively easy as it did.
He goes for his pulmonary function test on the 25th which can help diagnose NEHI. The only definitive diagnosis is with an open chest lung biopsy which we aren't going to do.
The expert in Nashville that we took him to thinks he probably has NEHI, but he's an atypical case. The more she learns about him (such as the way his last flare-up went) the more she is wanting to look into other things. One thing is the possibility of a tracheoesophageal fistula which would basically be a small tube that isn't supposed to be there connecting his trachea and esophagus. This leads to aspiration which COULD be the cause of his issues. It doesn't seem that likely because he's never had pneumonia, but she said if it was just a tiny bit it could be just enough to get his lungs inflamed.
The weird part that kind of has me hopeful is that his last 2 big flare ups have come on a week or so after vomiting (damn Lima beans..). She said the forcefulness of that could cause him to aspirated if that tube is there. Plus I read online that if gastric stuff is aspirated it wouldn't cause pneumonia because the stomach acid kills the bacteria.
Other signs are that he still gets choked on liquids fairly regularly and has a lot of hiccups and sometimes a distended looking stomach. Which would be from swallowing all that air that would be going from the trachea directly into the esophagus.
She said it's not likely. Probably only a 20% chance. But if it is this, it could be corrected with surgery. I'm trying not to get my hopes up too much but......they're up.
I'm probably setting myself up for disappointment, but I can't help it.
So we go to Nashville April 4th and 5th for them to do a swallow study and bronchoscopy (this time with an ENT present).
She wanted to do something called an impedence probe too that would be left in for 24 hours and checks for silent reflux. But I think that would have been hard on him so we're going to wait for now.
I hate that we're putting him through all this crap again. I thought we were basically done with it. I know the Nashville doctor had brought up repeating some tests, but it didn't seem real until now. I feel like it's going to be harder now that he's older and so much more aware and not as easily soothed (no more bottle
). I'm trying to prepare myself mentally, but it's hard. I would give anything to not have to deal with all this. I can't imagine what it would be like to just live and enjoy day to day life with him without this constantly looming over our heads or a million appointments always on the horizon.
But I know there are parents in worse situations than me who would probably give anything to trade places for our situation, so I try to keep perspective.
Anyways, that's where we're at. Thanks for letting me dear diary all this. I'll keep you all posted about what we find out!
If you're not in the Facebook group, DS had a flare up a week or 2 ago requiring oxygen for a few days and we ACTUALLY GOT HIM TO WEAR IT! Amazing and something I didn't think would happen as relatively easy as it did.
He goes for his pulmonary function test on the 25th which can help diagnose NEHI. The only definitive diagnosis is with an open chest lung biopsy which we aren't going to do.
The expert in Nashville that we took him to thinks he probably has NEHI, but he's an atypical case. The more she learns about him (such as the way his last flare-up went) the more she is wanting to look into other things. One thing is the possibility of a tracheoesophageal fistula which would basically be a small tube that isn't supposed to be there connecting his trachea and esophagus. This leads to aspiration which COULD be the cause of his issues. It doesn't seem that likely because he's never had pneumonia, but she said if it was just a tiny bit it could be just enough to get his lungs inflamed.
The weird part that kind of has me hopeful is that his last 2 big flare ups have come on a week or so after vomiting (damn Lima beans..). She said the forcefulness of that could cause him to aspirated if that tube is there. Plus I read online that if gastric stuff is aspirated it wouldn't cause pneumonia because the stomach acid kills the bacteria.
Other signs are that he still gets choked on liquids fairly regularly and has a lot of hiccups and sometimes a distended looking stomach. Which would be from swallowing all that air that would be going from the trachea directly into the esophagus.
She said it's not likely. Probably only a 20% chance. But if it is this, it could be corrected with surgery. I'm trying not to get my hopes up too much but......they're up.
I'm probably setting myself up for disappointment, but I can't help it.
So we go to Nashville April 4th and 5th for them to do a swallow study and bronchoscopy (this time with an ENT present).
She wanted to do something called an impedence probe too that would be left in for 24 hours and checks for silent reflux. But I think that would have been hard on him so we're going to wait for now.
I hate that we're putting him through all this crap again. I thought we were basically done with it. I know the Nashville doctor had brought up repeating some tests, but it didn't seem real until now. I feel like it's going to be harder now that he's older and so much more aware and not as easily soothed (no more bottle
). I'm trying to prepare myself mentally, but it's hard. I would give anything to not have to deal with all this. I can't imagine what it would be like to just live and enjoy day to day life with him without this constantly looming over our heads or a million appointments always on the horizon. But I know there are parents in worse situations than me who would probably give anything to trade places for our situation, so I try to keep perspective.
Anyways, that's where we're at. Thanks for letting me dear diary all this. I'll keep you all posted about what we find out!
