Oh what a night.....

W​e headed to our local children's hospital to the ER last night. In the past they have transferred us to Houston and been very easy to work with. That was not the case last night. They ran labs and despite signs of infection, dehydration and elevated pancreas enzymes they discharged Alex this morning with a temperature of 104.8. Standard protocol for a child with a port or central line is to admit for any temp over 101 and do 48 hours of antibiotics while you wait for cultures to come back. So the fact they would discharge us with that temp is crazy and neglectful! I immediately contacted Dr. Koenig and she told me I needed to get on the road and head to Houston. So with no sleep I dropped Bruce off and Alex and I continued on. We arrived in Houston at 10 AM with a temp still over 104. It has been an extremely tough day on Alex. He feels horrible. He has vomited close to 10 times since last night. He is in pain and nauseous. He had a very scary seizure in the ER where he couldn't communicate with me for 15-20 minutes. We have just made the decision that it is time to stop his feeds and give him a break. So we are starting IV fluids. I will discuss the seizure with Dr. Koenig tomorrow and get her thoughts.

The bright spot in the day was meeting a friend I have had on the internet for the past few years. She is as fun as she seemed and her littel guy is precious. I just wish we would have had more time together.

I will update tomorrow. Thank you for all the well wishes and prayers.

Ali