I Just Wanna Figure this Out.

So I have to come up with the right decision and I am not sure how I am going to do that. It quite honestly scares me to death. What if it is the wrong decision. Honestly it is a decision that Travis and I both have to make and agree on together. That decision is what is the right thing to do to keep our sons esophagus open? I am not sure I know what that answer is. I think I thought I did for awhile but that is just not working. For those of you that may not know our son was born with Esophageal Atresia/tef and down syndrome. Along with Tracheomalacia, Bronchomalacia, and laryngomalacia. He had his share cut out for him lets put it that way. And he made it through it all. Why because he is a little solider. But Lucian had his primary repair on February 19th 2008. He had a nissen fundoplication done July 15th 2008. That was what I thought was the answer to Lucians esophagus staying open. It was thought that Lucian was refluxing so badly from his primary repair surgery being such a tight connection it pulled his stomach up a little bit which in turn makes him have acid reflux and having the nissen fundoplication done would help stop it. Because that is where they do a wrap of the stomach around the esophagus. In Lucian’s case he has a thal nissen which is a partial wrap. It is actually a 270 degree wrap in stead of the regular nissen which is a full wrap. We choose the partial wrap because one that is what doctor rogers suggested and two because it is the most normal for someone to have because when you have a nissen you really cant vomit at all especially with a full one. With a partial one you really have to work hard. For the first few months after Lucian had it he was wreching and it was horrible. Watching him try and vomit but he couldn’t then watching him desat and turn purple from holding his breathe,.I am so glad we are past all of that. Most all kids do that after a nissen I just didn’t know that until after I researched it plus he was having so many other issues at the same time it got really confusing and complicated. Anyways we made it thru all of that. I think we are finally past all of the pneumonia issues to I hope. Knock on wood. Now we just have this issue with his esophagus. Why wont it stay open? So we thought that with having the nissen it would stop the reflux and then his esophagus would stay open and we wouldn’t have to have very many more dilation’s. Not the case though we have been dilating Lucians esophagus every week for the last 10 months and we still cant get it to stay open. So he says we are going to continue to do things the way we have for the last couple times and by May if his esophagus doesn’t stay open then we have to consider other things. On the outside if you didn’t know Lucian at all if you just walked up to him with him clothed you would never know that he had a problem other than the way he sounds. He would seem just fine. Probably like he has never had a problem but then you take his clothes off see all of the battle wounds and his g tube and then the story unfolds it’s self. And let me tell you a year seems like a life time. But such a life time of Miracles. I am still researching on stents, steroids for the esophagus and then there is going back in and undoing his primary repair and re doing it. I wont do the stents because there is to much to risk and to many problems and it is not long term. So I just have to figure it out. I am broke out in a stress rash all over my tummy and arms from worrying and trying to figure this out. Lucian can only have so many more dialtions with the ketamine and the verset. Because eventually he will build up an immunity to it and it wont work. Then he would have to be put to sleep and that is an issue with his malacia and breathing. So hopefully between now and then everything works its self out. I am praying to god that he is looking out for our little guy and his esophagus will magically stay open. But some how it may not be all that easy. It is some what depressing knowing your child has to go thru this. When all you want is the answer.