Thursday, April 2, 2009 You Take The Good With The Bad

We went to see Shailee today. She seemed very uncomfortable today but i think it is because they intubated her again (put the oxygen tube down her throat) which they had to do because her blood gases were still too low. But she had her tounge hanging out and was messing with the tube most of the time, and when i said something about her tounge the nurse that was on duty (one i have never met until today) was very short and rude and tried to tell me that it was part of her syndrome but i have never seen or heard anything about the tounge hanging out of their mouths like that, and i have done much research. And maybe it will be a thing for her, but i just find it odd that in all the pics i have she only has her tounge out in the ones that she has the oxygen tube down her throat so i am hoping that is the only reason why, i just really feel the nurse could have been a little nicer about my concerns instead of being so rude. The nurse also told me very bluntly i might add, that Shailee can't swallow! Later the CNP stopped by and talked to us about Shailee and i asked her about her not being able to swallow and she said that she just doesn't seem to have a gag reflex and she doesn't swallow well, but they don't know if it is permanent or not, so it is another thing that time will only tell, so something else to play the waiting game with. We also saw the orthopedic surgeon today as well and he told us that her belly is still healing well and that as long as that doesn't change they wont worry about the reconstructive surgery for as long as a year to two years. Right now the heart is the most important thing to get passed, and she is having another heart echo tomorrow so they will know more once that one is done. Shailee was also very active today just moving her arms and legs (well leg since one is in a cast) all over the place. She was opening her eyes alot today as well, and she isn't looking as yellow as she did a couple of days ago. All we can do is to take things one day at a time, and we will take the good with the bad, but she is still hanging in strong and i just know she is going to make it out of this sometime.