Life Ain't Always Beautiful

Well Kayden made it oh about 5 days out of the hospital and had to go back. On Monday night he was very lethargic & he wasn't eating or drinking much, his oxygen dropped into the 80s & his temp got to 102.9 so needless to say I called the cardiologist on call at his office & took him to the ER. They were expecting him so they got him back ASAP! They got him connected to the monitor & on some oxygen, got blood & put an IV in & done an xray, ekg & echo. Come to find out he had a pleural effusion which is a pocket of fluid beside his lungs. It was on the left side & it was pretty big once they done an ultrasound on his lungs on Tuesday. So they drained it off & got 200 ml's off of him. They decided to check it in the morning which would be Wednesday. They did that and it was there again but not that big so it took the doctors all day to let me know what their plans were. By this time I had called Boston to talk to his cardiologist there who works with Kaydens surgeon. They told me it is in fact from the Glenn procedure they did & that they needed to put the chest tube back in & let it drain a few days. So I told the intensivist doctor what Dr.Marx(card. in Boston) had said, his response to me was 'He's not here & I am and he can't say what should be done without seeing it. I came in earlier to talk to you but you weren't here. We are going to wait 24 hours and see how it looks in the morning & go from there. It is possible we'll need to put a tube in but we are going to try to avoid that if we can because it won't make him happy. But if we do have to go back in and drain anything, then we are going to leave the tube in'. NOW let me remind you this...I NEVER LEAVE KAYDEN BY HIS SELF UNLESS SOMEONE IS THERE WITH HIM!! NEVER. I left one time Wednesday & that was to go home & take a shower & go get something to eat because I get sick of hospital food. My mom was there the whole time, from the time I left until I came back & she did NOT see this man until he came in when I got back and told the nurse I had spoke with Dr.Marx...so she said she'd go get the doctor & let me talk to him. But yea he really pissed me off I mean seriously dude, Boston is 100 times BETTER than this hospital and you're telling me this cardiologist who deals with this stuff EVERY DAY doesn't know what he's talking about. Oh lord if I could have gotten away with it I would have told him off...but yea you know how that goes....Anyways today, they did another ultrasound & the fluid is still there, they say its the same if not smaller so they were gunna go ahead and go in again, drain it & leave the tube (LIKE THE CARD IN BOSTON SAID)....To me the pocket of fluid looked bigger or like the first time..Let me tell you, when they went in fluid came out onto his bed they drained out about 250-560 ml's with syringes & on the bed was about 50 ml's so that makes 300 ml's JUST TODAY!! BUT YET IT WAS SMALLER?? Sounds to me like ya'll are douches!! But they left the chest tube in today & within a couple hours he had drained 100 ml's already. I have no idea how long this will be in but hopefully this effusion doesn't come back!! This kid just can't get a break though it seems =[ I hate it all but I know it's for the best!! I can't help but feel frustrated and think about how unfair this is to him..He should be outside playing and running around like a child!! It's not fair he has to be in a hospital & be in ICU every hospitalization because he is a cardiac patient....It's just not fair that he'll NEVER be a normal child. He'll have to limit his activity levels when he is older & he'll probably be on medications the rest of his life!! I love my heart baby more than life itself & I wouldn't change him for the world & in his own way he is NORMAL. I just hope people NEVER judge him for what is wrong with him or for what he looks like I hope they judge him for who HE IS!!  His heart disease does NOT define him & I hope he always remembers this!!! I am so thankful though that I've got an excellent support system and a great mom who is at the hospital right now so I could come home & see Alexis & get some clothes. Also I'm thankful for a wonderful sister who is keeping my two little baby boys =[ I miss them!!