Reality Check

We have been really lucky over the past few years compared to others..... not a lot of issues with his heart and cardio check ups every 3 to 6 months. I read about lots of others who require more care..... and ours is about to increase. This fluid build up is no joke ..... they take it very seriously .. in patients like him with the fontan surgery fluid is crucial ..... too much can cause problems and he needs to stay hydrated at all times. He will need to be closely monitored for I dont know how long ..... we are talking weekly visits with his cardio Dr. here at Medical City .......chest xrays , etc .... wow. He also will need to be on a low fat diet for at least 6 weeks. The fluid is serous which has fat in it .... his body is having a problem processing fat .. can happen when his body is disturbed by all these surgeries .. his lymph nodes are effected and secrete this liquid. Here is one article that sheds a little light on it http://www.buzzle.com/articles/draining-fluid-from-lungs.html . We had a new GI dr come by that I have heard good things about ... he was very nice Dr. An and  I will be switching Keifer to him. He thinks it is wise to do a scope .. upper GI on him again because last one was Jan 2012 .. so not right now this stay but a future time this year at Medical City. We may do a swallow study as well and ENT consult soon. I just keep telling everyone thank you. Since I'm in ICU i cant talk on my phone so sorry Im not very accessible that way right now .. text is always best for me anyways. But that is also why I have this blog so you can come here for updates.... (Hi Mom) ... so please everyone understand ... I also dont feel like talking alot .. Im still trying to absorb all of this stuff. So we will be spending the 4th of July in hospital .... Dr. Kao said we will be here 5 to 6 days...... this is my second time to spend July 4th in hospital last time was with Breanna in 2011. Our support group Amazing Little Hearts will be serving a meal that I plan to go to. We usually are in St.Louis for this holiday but will be there next year for sure. We are ok ...... he is stable .... they want to keep him in ICU a little more .. but may go to the floor later tonight or tomorrow. No new pics right now ..... A lady came by with music and a guitar.... he was very annoyed but he didnt want her to leave or stop singing either ... he put his hand over his mouth so we couldnt see his facial expressions.... and she had a student following her that did hand motions and he would yell at her because he wanted her to stop ... LOL .....now that I will admit is his mother in him.........