Weekend Warrior

Porter has had a great weekend.  He really enjoys sitting up and looking around ~ I mean who wouldn't want to look around after being flat on your back or your side for 3 months. Both Steve and I were able to hold Porter quite a bit this weekend which we all loved.  The nutritionist has changed Porter's food to one that has more fat in it but one which the fat is mostly broken down.  The docs are starting to think there is also something going on with his lymphatic system which has also been a big contributor to his edema.  With this, Porter is not able to digest the long chain fatty acids so his lymphatic system essentially leaks fluid. This new formula is supposed to help with this and allow Porter to maintain adequate nutrition.

 Porter has gone up and down on his vent settings as they continue to try to wean him.  He's doing pretty well with it but his lungs have quite a way to go to get to the place where he can breath on his own.  The team is weaning him slowly as they don't want him working so hard to breath that he's burning all the calories from his food.  He's still a growing boy and growing he is!  We brought in all of Porter's onsies that snap (the zippers don't work so well with all the lines) and we have him in a different one everyday!  Might as well put on a fasion show while there aren't any chest tubes or extra IV's in right??  The only thing missing is the red carpet!  The paparazzi is covered between mommy and daddy and all the nurses. Looking forward to another week of baby steps leading to big strides.


    Leave a Comment