Today was our long awaited and much anticipated visit with a pediatric GI doctor. Dr. Winsett was very personable (came even a little too far into my "bubble", if you ask me, but hey), listened to everything that was going on with Avery, answered all my questions.... and then told me what I both wanted and dreaded to hear. She wants to do an EGD on Avery (think colonoscopy but from the other end...). More info here: http://digestive-system.emedtv.com/egd/egd.html.
This is a good thing because it will tell us much more about how Avery's esophagus is functioning than the swallow studies show, which will help us to decide if he needs further dilations, if his reflux is acting up, etc. AND hopefully help us to figure out this cough! This is scary news because Avery's esophageal perforations and 5 week hospital stay were caused by a scope practically identical to what will be used for this test.
This is not the same doctor that caused the initial perforation, and she is supposed to be very very good. She also is only going to do the procedure when Avery's pediatric surgeon will be available (ie in town) in case of an emergency (which I don't even want to think about).
As much as I would love to sit back and avoid this test, I feel like it's necessary to further treat Avery's condition. I hate him having to take reflux meds unless we know he needs them. I hate not knowing if a stricture has developed until it's so bad we end up in the ER or worse. I hate holding my breath every time he eats. I hate hearing him cough and not knowing/being helpless as to what to do about it.
According to the EATEF forums that I follow online, many kids with Avery's medical condition/history have routine EGD's done every year to monitor the esophagus. I don't necessarily want one every year, but I don't think we're getting enough information from the swallow study, and this GI doc agrees. So here goes...
In the meantime, no food with "chunks" for Avery. Poor guy. Back to the baby food, yogurt, applesauce, and anything that melts in his mouth (puffs, etc.). We'll find out Monday hopefully when the test will be. Probably not until we get back from our trip home.
Wish Phil could be home for the procedure...praying, of course, that everything will go smoothly and for strength to take him in and hand him off without acting like a complete basket case.
What would a blog post be without a picture?? My little man without a worry in the world... :)
This is a good thing because it will tell us much more about how Avery's esophagus is functioning than the swallow studies show, which will help us to decide if he needs further dilations, if his reflux is acting up, etc. AND hopefully help us to figure out this cough! This is scary news because Avery's esophageal perforations and 5 week hospital stay were caused by a scope practically identical to what will be used for this test.
This is not the same doctor that caused the initial perforation, and she is supposed to be very very good. She also is only going to do the procedure when Avery's pediatric surgeon will be available (ie in town) in case of an emergency (which I don't even want to think about).
As much as I would love to sit back and avoid this test, I feel like it's necessary to further treat Avery's condition. I hate him having to take reflux meds unless we know he needs them. I hate not knowing if a stricture has developed until it's so bad we end up in the ER or worse. I hate holding my breath every time he eats. I hate hearing him cough and not knowing/being helpless as to what to do about it.
According to the EATEF forums that I follow online, many kids with Avery's medical condition/history have routine EGD's done every year to monitor the esophagus. I don't necessarily want one every year, but I don't think we're getting enough information from the swallow study, and this GI doc agrees. So here goes...
In the meantime, no food with "chunks" for Avery. Poor guy. Back to the baby food, yogurt, applesauce, and anything that melts in his mouth (puffs, etc.). We'll find out Monday hopefully when the test will be. Probably not until we get back from our trip home.
Wish Phil could be home for the procedure...praying, of course, that everything will go smoothly and for strength to take him in and hand him off without acting like a complete basket case.
What would a blog post be without a picture?? My little man without a worry in the world... :)
sweet baby. Praying it all goes well and you get good news. I'm still so bummed about Columbus- I was really looking forward to meeting him!!
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