Not a Good Day

I wish I was able to come on and post about how well things have gone today. Unfortunately, today has been a rough one. It started last night. Alex had a reaction to the bolus of the new medication to get his gut going. There was a lot of discussion about if it was an allergic reaction (a real possibility given Alex's history) or a known side effect of the drug. Immediately after getting the medication he turned bright red, starting itching, heart racing, light headed, and became extremely nauseous. Alex became really anxious because he knew we were supposed to continue on a slower drip of this medication. i was also nervous about this. I wanted to watch him as it started running and make sure he was okay so neither of us got great sleep. Alex woke up in a bit of a funk this morning. After everything he has been through he certainly deserves to have a day where he isn't happy! He is tired of constant people in our room. He is tired of everyone messing with him. He is tired of the doctors pushing on his already hurting stomach.  He has not felt well physically today either. He can't pinpoint what is wrong. He just "doesn't feel good". Our endocrinologist kept his hydrocortisone dose the same. His hospitalist didn't make any major changes. Pain went up on our secondary medication in hopes that he won't need to push the button on his PCA as often. GI is pretty much just waiting and watching, but we are keeping a close eye on his labs because his already high pancreas labs doubled overnight. (The med we are using is known to have a side effect of causing Pancreatitis, but it is one of our only options) The really tough visit was from surgery. First he wanted to check his surgical site and caused quite a bit of pain. Then he mentioned that if things don't start moving in his gut by the end of the week, he will have to take Alex back to the OR on Friday and open him back up to make sure their aren't more adhesions or any other issues that could be adding to our problem. This is obviously the last thing we want to put him through.

Please pray for us. Pray for my sweet boy...for his pain, for his heart, for his gut to start working, for him not to develop full blown pancreatitis.

Ali