Just One more Day with an Experience at Childrens Memorial Chicago

Lucian update 4/9/08
Category: Life

Hey just wanted to say what was going on, we talked to the doctors this morning and they expllained a few more things to us that make some what of a lilttle more since. I guess the thing there gonna thread up and out his nose is actually a small thread like string that they will guide up with a x ray through all the way up out his nose. they will tape it down. They will use that as a guide to dialate. They said they are gonna try and do it just giving him something to relax and they will watch his monitor and if all is good they will continue if it is not good then they will put him on the vent and give him something to put him out. It all just depends on lucian if they give him his passifer i think he might do ok i dont know, i know i really dont want him to go have to back on the vent though thats for sure. You can tell he needs a dialation for sure. He sounds really junky and he was not like that before. I ask if the reflux could be making where they sewed it together smaller and they said they dont think thats what it is. Well i think dont think and hasnt are to different things thats for sure. They haven done anything to be able to tell weather or not he is refluxing b/c he is not puking anymore but that doesnt mean he is not refluxing. I dono. Anyways i guess tomorrow we will find out what all is really going on like when we might get to come back home and things like that and of course what we need to know about him, i just pray to god that he does not have to be put back on the vent and that he does fine with this. I’m so worried for him, They said he could have this string thing for months. They said he will still be able to eat because the string thing comes out of the button so the tube the food goes through can still fit in there. I just hope it doesnt make him uncomfortable i cant imagine it feeling very good thats for sure. Lucian is so smart he is learning new things everyday but i think he will learn more when he gets home. He is some what behind because he has always had to be in a bed. He is 4 months old and cant hold his head up on his own yet, he can only do certin things with his arms and has not figured out how to lift up his legs to his hands yet but he will get there thats for sure. So we will be feeding him through his g tube for awhile. he still has the trachia malasia but it is at this point so far stable. So really tomorrow we will no alot more we will know whats going on for sure they said the procedure could take from a half an hour to a few hours so i dono it all depends on how he does. Well i will type more later.