Wednesday, April 15, 2009 Another Not So Good Day

We went to see Shailee today, and as usual of the few hours that we get to spend with her we spend most of that being bombarded by doctors. Shailee is still stable, and comfy, but the doctors didn't bring us very hopeful news today, but we will get to that in a minute. First of all, her heart echo came back good and the heart function is still improving. they still haven't lowered her heart medications but that is because they want to wait until they figure out when she will go into surgery (i will get to that as well). if she doesn't go to surgery soon they will begin to wean her from the heart medication to see how she does. She is wasn't quite up to a full feeding but is now, she is up to 63cc's and that is where she will stay until she starts gaining more weight. She now weighs 5 pounds 14 onces, but that is including the cast on her leg. Now to the conversation with the doctor today. She came to tell us that they were unable to do the bronch test on Shailee that they planned to do today and the reason was because they couldn't get the tube down there because her vocal chords are paralyzed (both of them) , now this is something that could correct itself later, but then there is always the chance that it won't. her vocal chords are stuck in a closed position so that stops her from breathing properly, swallowing, and it can cause her to have aspiration issues as well. Also they told us today something that we never knew that i think they should have told us from day one, but of course not, apparently, as we know she can breathe on her own, BUT it isn't effective enough for her to do it soley on her own (due to the vocal chords) so there is a good chance that she will have to come home on a respirator as well. But they said that within 5 min of the oxygen tube being out she turns blue. They also said due to the vocal chords she will have to have a trach put in as well as the g tube. the trach will be used for her breathing (either with the respirator or not depending on what she needs) as well as for suctioning her secretions out to keep her oxygen levels mantained. the g tube will be for feeding her. We have no idea if she will ever be able to talk or not, so we will have to wait and see what life brings her later down the road. they said that they will do the trach and the g tube at the same time and then they will have to do a later surgery to close off the omphalcele on her belly. But like i said before there is always a chance that this will fix itself, but there really is no way to tell right now. I guess what i don't understand is why they can't get the bronch tube down because of the vocal chords being paralyzed in a closed position, but they can get the other tubes in her throat, don't they have to go between them as well???? so i am going to have to ask the doctor about that, of course i never think of these things when they are right in front of me. What we are really sick of hearing is when all these doctors say she IS going to be severly retarded, yes that is what they say, but in reality of it all they DON'T really know if she will be severe or mild! Then the doctor today asked us how aggressivly we wanted them to care for her, so basically do we want them to do the surgery for the trach and g tube or do we just want to let it go and if she lives then great and if not then she dies! MANY of the cri du chat children i have learned about or talked to their parents, well i have learned that most of them don't thrive until later years like 3 to 5 years old, so why shouldn't my daughter have that same chance to see how she will thrive or not thrive?? doesn't she deserve a chance too? just like the doctor told me today that most of these kids only live to their 20's, well many of them live to be much older! i have talked to several parents who's children are in their 30's and 40's!! It is just so hard to only hear the negative side of everything from them on a daily basis. I understand they are trying to be real and prepare us for what COULD happen, but in reality they DON'T know what is going to happen. God is the only person that knows what is in store for little Shailee, and no one else will know until we get there, but i DO know that we are going to give Shailee every chance that she can to have a good life, and just like i told one of the doctors today "Shailee is going to be how ever she is going to be and no one can change that" It doesn't matter because we are all going to love her just the same, and yes she is going to need alot of care but she will have whatever it is that she needs to reach her full potential because she deserves it just like any other child. Sorry for rambling, it has just been a rough day. here are some new pics of her from today, but she was very tired and just wanted to sleep since she had all the tests done today. I will update more tomorrow.