Sorry I did not update yesterday, but we had a few surprises yesterday morning that made for a crazy day! The first was that we woke up to the news that Alex had a positive blood culture meaning he has his first line infection. Our feelings at this point are that Alex most likely translocate​d a bacteria from his gut after surgery which then infected his port. We are on 2 very strong antibiotics to try and treat the infection. Dr. Pacheco (our allergist/i​mmunolosist​) gave Alex a HUGE dose of steroids before starting hoping to allow us to us these antibiotics with minimal allergic reactions.

S​hortly after that surgery came in. They were not happy with the amount of output Alex is having from his Gtube and NG tube (down his nose). Along with it being very large amounts, it is also a mix of blood and bile. Although the blood has pretty much stopped at this point. There are several concerns: The first was that his pyloroplast​y could be leaking. We did a study where they inject contrast into the stomach and look to see if it leaks. There did not appear to be any leaking, however we were discouraged that not much contrast made it into the intestines which means at this point he is still pretty swollen. The second concern was a possible abcess. We have not ruled that out at this point.

The plan today is to go for a CT scan of his abdomen to check for an abcess or anything else that could be wrong from surgery. If they were to find a problem, Alex would have to go back into surgery and most likely it would be a more extensive open procedure this time. If they don't find anything we will just continue to watch from the GI standpoint of things.

As for the port...The doctors are trying to decide whether they need to remove it to prevent reinfecting with this nasty infection once we stop antibiotics. They have not made a decision yet. If it needs to be removed, the surgeon would go in and remove it and they would have to place several "normal" IV's which is a disaster by itself. Then after about a week on antibiotics when they are pretty sure they have the infection cleared they would do another surgery to place a new port.

Alex is slightly better this morning, but still FAR from himself. He is extremely lethargic. He has not been out of bed yet and doesn't even really want us to raise the head of the bed much. He is talking a little more this morning, but only to me and Mom. His coloring is horrible. He is a pasty, yellow/gray color. We are just praying with each day for more of "our" Alex back. We miss his spunk!

So needless to say, we have had a lot to process! To everyone who has called and emailed, I cherish each thought and prayer. Please bear with me as I have not been able to get back to so many of you we have been so busy.

Thanks for you support and Prayers,

Ali