Ideas

The day of the big conference came and went, and no major decisions have been made, just more ideas were tossed about.  Once again, it all depends on how the little one reacts to these ideas and what the findings are.  Basically what was decided was~increase the erythromycine which will empty his stomach faster which will make him hungry earlier in order to get more calories, and they also increased his formula to 24 calories per ounce.   By doing that his stomach hasn't tolerated it extremely well, he is spitting up A LOT~which is not good because that is less calories his body is consuming.  The next step is an X-ray to see where his lungs are at before they begin to wean him off of his Lasixs which drains the fluid from his lungs.  They are not sure whether his lungs are being filled with fluid that his heart is putting there due to the holes or he is aspirating his formula every time he drinks.  If that is the case they might have to put a feeding tube in him, just not the kind he had in before~not the NG tube~which goes right into his stomach, but either a NJ tube which goes directly into his intestines,  If they do an NJ tube he will have to be in the hospital the whole time it is in, he isn't allowed to go home with an NJ tube in.  The other feeding tube is called a Mickey, which is a tube they surgically place in his stomach.  He is allowed to go home with that.  With that tube he will be on continuous feeds.  If they decide to go with the feeding tube route, they will first do a catheterization of his heart by going up through his groin.  They will look around at his heart, check his pressure and go in and put a coil in to close his PDA.  They will also consider doing the same thing with his VSD~but that holds more risk to going to fix the VSD. They would like to get his heart off the table when considering what is causing the feeding issues.  That is basically everything that is being talked about as of today.  We know not to take what they say as exactly what they are going to do because like I said before, it really is all determined by the little guy.  Things change here hour by hour most times not just day by day. 

Here are some pictures and videos from yesterday (May 1) and today (May 2):

Guess who bought this shirt for the little guy :)  He really does love her~his face lights up when he sees her.

I think he's about to punch me if I take one more picture of him. :P

My little man hanging out enjoying the view of Pittsburgh

He wanted to go for a walk in his new kicks :)

He has such skinny legs, his shoes are bigger than his leg, it's so cute!

Mommy and Xavier <3


Here are some videos:  First one is of the nurse giving Xavier his meds in his swing while he is sleeping, the trick is, Xavier HATES his Lasixs and he wanted him to stay asleep. 
The second video is of Xavier in the swing with his leg popping in and out of the swing, it was so funny, it looked like a turtles head peeking out of it's shell and pulling back in :)
The third video~please excuse my high voice...it's what he responds to to smile.