Well today was one of those days that may as well not even have existed. It was frustrating to say the least. After this morning's update we met with the resident and they were actually considering discharging him. Almost literally after the post went up Elias vomited again, but this time it was a bile content with a greenish-brown color. This really began to concern us since the color was changing appearance. With that fact alone we were appalled that they were content with what was going on. They actually asked us if we were comfortable taking him home today. We very expressively told them NO! We pointed out that Elias was no better than when we had brought him in on Sunday. They had really not done anything for him, except play with his feeding regiment. We asked why there was such emphasis and concern being placed on his feeds alone. Pulmonology had not been in to see him yet, and if the feedings were of such great interest then why was GI not brought in to consult, especially since that is there area for management with Elias complex care team. We were told around 1030a that the attending would come and speak with us about a few things. Basically, what they were saying was that there was nothing clinically wrong with Elias and the fact that he only had two episodes, they did not feel they needed to keep him. What about the lethargic demeanor Elias was displaying? The visible "grump face" and lack of smiles. Again, he was not any better than 2 days ago. So we waited and waited and waited and got pissed off and then got even more angry as we watched the clock pass 4p with no update, no visit from a doctor, no test, no one even looked in on Elias. We were even using our own supplies for his ostomy! Finally the surgery team was rounding, so his surgeon popped in and asked what was going on. I, in my usual delightful but sarcastic tone replied, "We are hoping you know something, no one has told us anything today." When we told him about the color of his emecis he was not pleased at all with that. He could also tell that Elias was certainly no where near his baseline and was baffled by the consideration of sending him home. As usual he pulled things through and within 30 minutes we were talking to the attending. Katharine stuck her head out to find the nurse while the surgery team was outside the room discussing things, they stopped conversing and moved further down the hall, and you could tell that they were talking about Elias and were not pleased with the care and lack of attention he was getting. When the attending came in she informed us that her overwhelming concern was Elias' cold temperature. She began to talk about neurological issue that can cause this and blah blah blah. She then said that they were going to "start over" and redo all the lab work again to see if anything is showing now. They also took another x-ray of his chest, because we are still concerned about pneumonia, particularly after this mornings episode. We are still waiting for results at this moment. Honestly, I believe that his surgeon stepped in and went to bat. If anyone in that hospital knows Elias as good as we do, it is him. He sees him A LOT, inside and out! So while we are not 100% certain that is the way things happened we are pretty confident that it is, thank God for his passion and devotion to his patients.
Just got preliminary results of a few of the labs, all negative so far including pneumonia (THANK GOD!). This is good, but still perplexes the doctors why he is so listless and lethargic. There are still some other labs pending so maybe that will turn up something, but it seems the more serious infections are going to be negative. Hurray!!