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.

Ale​x 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.

L​ast 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!

Hopef​ully, each day will continue to improve.

Ali​

Alex is still really puny today. He has a temp over 102. His labs still don't look great, but they look MUCH better then yesterday.

T​he good news is feeds are up to 10 cc/hour.

Ple​ase continue to pray for our family. We are trying to remain upbeat and faithful that God will bless us. Howver, it is difficult when the hits keep on coming. Todat Bruce found out that he has a hole in his retina that will require a laser procedure.

A​li

Update at 6:30: Alex is struggling again. We have had to put him on oxygen. His saturations are lower then we would like even on 2 liters of oxygen. We are running more labs. Dr. Pacheco (our immunologis​t) has also decided to run IVIG to try and help his immune system fight this infection. Dr. Koenig is concerned about him, but we are hoping he will turn the corner tomorrow. Since she will not be around tomight she will have the ICU doctor check on us periodicall​y throughout the night to make sure Alex stays stable and doesn't get any sicker.

I will update in the morning.

For the most part we have had an okay day. Alex has been quiet at times and normal at other times. He stayed fever free for most of the day. he spiked a fever of 101.3 shortly after 7:00. Right after we found out that Alex has a central line infection. (Gram negative rods- for those who want to know)We are on an antibiotic that covers this infection. Tomorrow we will discuss whether we need to remove Alex's port.

The positive to come of the day is that early on we all agreed that feeds were not responsible for last night. So we restarted feeds around lunchtime and he is tolerating them well.

I will update in the morning when i know more.

Ali