I am constantly amazed by this child. We were at the hospital for 6 hours, after getting Edison out of bed MUCH before his leisurely 8 o'clock wake up time and driving for an hour, and not a peep out of him all day. He really varies, sometimes going for the doctor really throws him for a loop and sometimes he just goes with the flow. So, the updates:
Sweat test: this is the test they did to rule out cystic fibrosis. Our pulmonologist wants it more just to get that completely out of the picture. Everyone is anticipating it will be negative. We should get the results tomorrow.
Surgery: we met with our surgeon and everyone is still concerned about the retching episodes. You may recall that in the past he has had his esophagus dilated when he gets a stricture, or narrowing, which is common in babies with TEF (tracheoesophageal fistula). The thinking is that that's what is happening again, saliva can't get down so it comes up causing him to gag and then retch. The second possibility is that the saliva can't pass through the "wrap" he had around his stomach to prevent reflux. We'll go back next Tuesday for another test to check this out and then he wants to do a big test in the O.R. within the next month or two. I am really dreading that because he would need to be reintubated (put back on the ventilator) during the procedure and that is a fear of mine because after his last surgery they had a hard time getting him off. In general though he is THRILLED with Edison's progress and thinks the looks "just like a regular baby". We think he's cuter than a regular baby but we get his point :)
Neonatology: we are so impressed with our doctor and the nurse practitioner. They are an incredible team and we feel so comfortable knowing they are on our side. We met with them for a long time. Edison's weight is in the 30th percentile! He still has a ways to go in length but I think somewhere along the way we've heard that first babies fill out and then get longer.
We talked a lot about his development. They definitely feel that he is making progress. It's so hard because no one can really predict how things will go. Our doctor said that if a baby sits by age 2 it's a good indicator that they will walk. So we will be working hard on that this year.
We also talked with the social worker for a while. Something we haven't talked about too much on here is the adjustment process after you leave the hospital. Initially we had the euphoria of "yay, we're home, we made it". But then reality sets in and you realize it's still going to be a long, long process. So we've gone from an acute stress, dealing with life and death, to a more prolonged period of waiting and not knowing. So anyway, it was good to talk with her about that.
So! A busy day (oh yeah, he had a chest x-ray too). But the reports were all positive. We are so proud of Edison's progress and can't wait to see what the coming year(s) bring.
Sweat test: this is the test they did to rule out cystic fibrosis. Our pulmonologist wants it more just to get that completely out of the picture. Everyone is anticipating it will be negative. We should get the results tomorrow.
Surgery: we met with our surgeon and everyone is still concerned about the retching episodes. You may recall that in the past he has had his esophagus dilated when he gets a stricture, or narrowing, which is common in babies with TEF (tracheoesophageal fistula). The thinking is that that's what is happening again, saliva can't get down so it comes up causing him to gag and then retch. The second possibility is that the saliva can't pass through the "wrap" he had around his stomach to prevent reflux. We'll go back next Tuesday for another test to check this out and then he wants to do a big test in the O.R. within the next month or two. I am really dreading that because he would need to be reintubated (put back on the ventilator) during the procedure and that is a fear of mine because after his last surgery they had a hard time getting him off. In general though he is THRILLED with Edison's progress and thinks the looks "just like a regular baby". We think he's cuter than a regular baby but we get his point :)
Neonatology: we are so impressed with our doctor and the nurse practitioner. They are an incredible team and we feel so comfortable knowing they are on our side. We met with them for a long time. Edison's weight is in the 30th percentile! He still has a ways to go in length but I think somewhere along the way we've heard that first babies fill out and then get longer.
We talked a lot about his development. They definitely feel that he is making progress. It's so hard because no one can really predict how things will go. Our doctor said that if a baby sits by age 2 it's a good indicator that they will walk. So we will be working hard on that this year.
We also talked with the social worker for a while. Something we haven't talked about too much on here is the adjustment process after you leave the hospital. Initially we had the euphoria of "yay, we're home, we made it". But then reality sets in and you realize it's still going to be a long, long process. So we've gone from an acute stress, dealing with life and death, to a more prolonged period of waiting and not knowing. So anyway, it was good to talk with her about that.
So! A busy day (oh yeah, he had a chest x-ray too). But the reports were all positive. We are so proud of Edison's progress and can't wait to see what the coming year(s) bring.
posted by Jen | 6:42 PM
2 Comments:
Sounds like a good "report card" to me. Attentively reading your posted report of yesterday's findings and prognoses, I was, once more, so impressed with the assembled "Dinky Team"--and that team includes his mom and dad at the helm! Much love to you all.....
dobie
The picture of Eddie grabbing his toes says it all. Each little step he takes is a milestone. We too are proud of the progress he has made, and so, so proud of the stamina and positive attitude you two have shown throughout your ordeal. Keep the good reports coming and we love you all,
Pa
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