Alex and Maddy

Alex and Maddy

Thursday, February 12, 2009

We have been on a real roller coaster the last two days. Every time we think we are on the upswing we hit another hurdle. We have had a number of allergic reactions and Alex's temperature was down over night, but is back up over 101. The doctors are all watching him extremely closely. We have two main concerns right now. One is that we have had some serious allergic reactions and there is a very real possiblity of anaphylaxis. We now have a plan in place where they would quickly give Alex epinephrine and move him to the PICU. They would then notify Dr. Koenig and decide on treatment. There is also the fear that the continuing fevers and some of Alex's lab values could be pointing towards an infection. Unfortunate​ly the two antibiotics they would normally use for GI tract infections are medications Alex cannot have. One is a medication that gave Alex his worse flare of pancreatiti​s to date. We are not willing to try this medication again. The other is a medication that caused severe facial swelling and flushing. There is a possibility we may have to put him in the ICU and try to "desensitize​" him to it with tiny doses and then continue treating with that medication. This is pretty scary so we are praying that we can keep the fever low enough that we don't need to go this route. There is one more antibiotic we may try tomorrow. My fear is that our medication allergies are growing daily and we may need some of these drugs at some point.

As for pain, it was much better controlled today, although Alex is still staying pretty stationary. At this point we are able to lift the head of the bed a little, but that is about it. He is also putting out much more bile between the 2 tubes we have draining. We are watching this as it should be decreasing, not increasing.

I think that pretty much sums it up. thank you to everyone for your continued prayers.

Ali

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