This is going to be a little short because that trip to the hospital today wore us ALL out! Everything went really well, despite the fact that poor Edison cried basically from the time we entered the door until the time we left. I think he was hungry (he couldn't eat for 3 hours before the test, and Martin and I both feel that he now "senses" where he is and that something's going to happen). So he cried all through his visit with his nurses at the NICU. It's a shame they can't see the miles of smiles we get at home. Anyway, the study went really, really well. You may recall that they tried this swallow study 3 times while Edison was in the NICU but it never worked. This time they gave him the different substances by a spoon rather than a bottle. So I don't think it was as shocking to him. He swallowed everything with no problem! It was neat because they are doing an "x-ray video" at the time so you can see his little insides working to swallow the barium which shows up as a really dark liquid. His swallow is a little weak but they felt like that was because he hasn't had any practice (other than his own saliva). The good thing was none of it went into his lungs (aspiration) and he protected and maintained his airway! Yay! We saw our surgeon afterwards and the general consensus was that we'll wait until we go to the feeding/swallowing program (12/8) but that after that time we'll be able to start him on formula/cereal.
As for the retching episodes our surgeon feels that we have ruled everything "anatomical" or surgical out and that it will just be a fact of life for a while. It may be that the Nissen fundoplication (stomach wrap) is a little tight and giving him a gagging sensation. Our surgeon basically said we've done a lot of things to him that worked, because he's obviously better, but they aren't perfect.
One thing Martin and I got a kick out of...we had recorded one of his choking episodes on a disposable video camera that you can get at CVS (like a disposable camera). Our surgeon was so struck by "technology" and the fact that you can have this camera. It just tickled us because he has got to be the biggest consumer of technology with all of the surgical advances, yet he was enthralled by our little camera.
So much for keeping this short!
As for the retching episodes our surgeon feels that we have ruled everything "anatomical" or surgical out and that it will just be a fact of life for a while. It may be that the Nissen fundoplication (stomach wrap) is a little tight and giving him a gagging sensation. Our surgeon basically said we've done a lot of things to him that worked, because he's obviously better, but they aren't perfect.
One thing Martin and I got a kick out of...we had recorded one of his choking episodes on a disposable video camera that you can get at CVS (like a disposable camera). Our surgeon was so struck by "technology" and the fact that you can have this camera. It just tickled us because he has got to be the biggest consumer of technology with all of the surgical advances, yet he was enthralled by our little camera.
So much for keeping this short!
posted by Jen | 9:05 PM
4 Comments:
During this season that reminds us to pause and give thanks, all of us who have gathered here at E/D's place (since February!) have lots to be thankful for, and the latest report adds to our tally. We will be thinking of you three as we gather at your folks' place tomorrow. love, and thanks....
dobie
Hey guys...sounds like things are going well. I have not been able to post lately, but have been keeping up with the happenings!I just wanted to remind you guys what awesome parents you are.. There is just so much to be thankful for this holiday! He may not get any turkey this year.. but will get to enjoy it and all the other yummy things next year! You 3 continue to be in my thoughts and prayers! Love, Bethany
Dinky, Way to go!! I am so so very happy to hear how well the swallow studies went. And to think that you will be able to start oral feeds so soon? That is amazing news and another wonderful milestone.
Your little man is definitely growing up and I am so thankful for his life and his accomplishments so far. (His wonderful parentage doesn't hurt either.) I wish you all so much love and happiness this Thanksgiving.
Hey Eddie - gobble gobble!! I have a feeling that this time next year you will be feasting on turkey and stuffing!!
Love,
Sue
Hey "Spunkster", you are full of surprises aren't you? This is a big one, and I promise... next year I will cook Thanksgiving just for you. We are so proud of you and of Mom and Dad for all you have come through. I know there are still some bumps ahead, but you have proven that your are "the little engine who did". Much love and Happy Holiday.
Pa
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