Tonight I choose to start with the positive...
Bruce's eye procedure went very well. It was shorter then expected. Hopefully, that is the end of it and he will have no lasting effects.
Alex has felt a little better today. He has not had a fever at all. We have the oxygen down to one liter and his saturations are holding steady. med transport was able to get his peripheral blood culture today with just one stick!
ALEX"S FEEDS ARE UP TO 15 CC'S/HR AT 75%!!!!!!!!!
On to our concerns...Alex is still pretty puny and tired. He is fighting a pretty serious infection. His labs are still off. The docotrs are not sure what to do. In a "normal" child, you ALWAYS pull a port that is infected with gram negative rods. In Alex there is the very real concern that our access for central lines and port is very limited. If we use all those spots it would be devestating to Alex. So it is a much tougher decision. Please pray for the docotrs to have wisdom in making these decisions.
Last night was once again a long night. Dr. Pacheco made the decision to give Alex IVIG. Well IVIG cannot be run with TPN so we had to stop his TPN. Within an hour his blood sugar had dropped to 53. So we bolused some D10. This caused his blood sugar to go up to 215. We continued to see saw. Alex's temp also went from 95 to 102 within an hour causing severe chills. Needless to say Mommy didn't get much sleep.
Alex needs blood tomorrow as you can see by the picture! It is amazing how white he can get. Even his lipd don't have color!
Hopefully, each day will continue to improve.