I wanted to clear up a few things. The question that has been asked the most since Anton was admitted to the hospital was "he was eating fine is Russia what happened?" I totally understand that question and I want y'all to feel free to ask any questions you may have.
Anton was eating fine in the hospital and really he was eating okay once we brought him home. The reason we had the swallow study done is he coughs a lot when he eats and gags a lot but he also did this in Russia.
During the swallow study what they do is give him a different things to eat and drink that have something (radio active I guess) that will show up on x-ray. Then they put it in a few different things for him to drink and eat to see where it is going once he drinks and eats it. They do a live x-ray the whole time he is eating and drinking to see where it goes. They started with a super thin liquid like water and it aspirated into his lungs almost every time he drank it, then they thickened it up a little (like chocolate milk) and tried that and he still aspirated a few times, then they made it thicker (like honey) and he still aspirated into his lungs then they tried baby food and that even aspirated. He FOR SURE was aspirating every time he was eating in Russia and the way we know is he had Pneumonia several times while he was there and aspirating causes Pneumonia.
It is only by the grace of God we caught it because you CAN die from aspiration. He can't eat anything else by mouth until he has physical therapy to learn how to close his airway when he is eating. Getting a G-Tube is a really good thing for his EB too because it will allow us to get all the calories in him that he needs to heal.
None if this is bad, Anton is NOT sick they just have to leave him in the hospital because we have no way of feeding him without the G-Tube.
Hope that helps clear things up. Love you all!
Anton was eating fine in the hospital and really he was eating okay once we brought him home. The reason we had the swallow study done is he coughs a lot when he eats and gags a lot but he also did this in Russia.
During the swallow study what they do is give him a different things to eat and drink that have something (radio active I guess) that will show up on x-ray. Then they put it in a few different things for him to drink and eat to see where it is going once he drinks and eats it. They do a live x-ray the whole time he is eating and drinking to see where it goes. They started with a super thin liquid like water and it aspirated into his lungs almost every time he drank it, then they thickened it up a little (like chocolate milk) and tried that and he still aspirated a few times, then they made it thicker (like honey) and he still aspirated into his lungs then they tried baby food and that even aspirated. He FOR SURE was aspirating every time he was eating in Russia and the way we know is he had Pneumonia several times while he was there and aspirating causes Pneumonia.
It is only by the grace of God we caught it because you CAN die from aspiration. He can't eat anything else by mouth until he has physical therapy to learn how to close his airway when he is eating. Getting a G-Tube is a really good thing for his EB too because it will allow us to get all the calories in him that he needs to heal.
None if this is bad, Anton is NOT sick they just have to leave him in the hospital because we have no way of feeding him without the G-Tube.
Hope that helps clear things up. Love you all!
No need of explanations love...We know you are doing what is BEST for him. Keep up the good work!
ReplyDeleteThank goodness you got him home when you did and he is in such good care!
ReplyDeleteMy 2 year old son has this same problem. He has dysphagia (swallowing disorder). He has a special feeding chair, bottles, and food lists. We do feeding therapy once a week, too. Eventually, the feeding therapy, phyical therapy, and extra time for the body to develop work and he'll get better!
ReplyDeleteCongratulations on the adoption. He's a wonderful little boy!
Is there anything that you guys need? Food, snacks...anything I am here in Fort Worth and would be happy to bring something up to you guys. I have also added Anton to our prayer list.
ReplyDeleteSounds like what he had was a Modified Barium Swallow Study. The "stuff" they used is barium, which is put (in liquid or powdered form) into the food and drinks because it shows up darker when exposed to radiation and can then be seen as it moves from the mouth, through the oropharyngeal structures, and to the esophagus.
ReplyDeleteKudos to you for being proactive and making such difficult decisions so quickly!
Heya - just so you have the information to be able to follow it up if you want to:
ReplyDeleteThe study Anton had done is called a barium swallow or a barium meal - barium is the name of the radio-opaque (visible on x-ray) stuff they put in the food/drinks for the test.
The very bad thing that happens when you're aspirating a lot is called aspiration pneumonia and like all pneumonias it can be very dangerous - but especially with aspiration as the material that's been aspirated (food breathed in to the airway or lung) might stay there rather than being coughed back out, which can cause some really nasty inflammation and infection.
Wishing Anton a speedy recovery from his surgery - you might like to visit the Feeding Tube Awareness facebook group for some support and tips when you have time.
Thank you for the update, dear Vanessa.
ReplyDeleteI pray for you and your family every day! Many kisses to Antoshka :)))