Last night's labs looked okay so we continued with the fan/ice routine for several hours. The PICU attending was in our room numerous time. At some point it became clear that we were making no progress as Alex's temp continued to be in the 102's and 103's. The PICU doctor felt that it was imperative we break the fever and wanted to give a dose of tylenol. I had her check with Dr. P who okayed 1 dose. Alex's temp did come down with the tylenol. By this point it was after midnight and I finally was able to settle down and go to sleep. I was woken up, at 4:00 AM by the nurse. The tech had come in to do vitals and found Alex laying with his eyes open, but couldn't get him to respond. He realized something wasn't right and went to get the nurse, who in turn woke me up. I am so grateful for the tech who clearly realized the situation and acted on it. When they woke me up they told me they thought Alex was having petit mal seizures. I went to try and get Alex to talk to me. He was staring blankly, not blinking. He would not respond to his name. He would not follow commands. He was twitching some. I was immediately concerned. The resident came in shortly after and also thought he was seizing. She videoed so Dr. K could see it. The PICU doctor was the next to arrive. She was unsure whether he was seizing or he was just too drugged on fentanyl. So she turned off his fentanyl pump. I would not get a response or here my sweet babies voice for over 4 hours. It was a long 4 hours for sure. Dr. P was here first thing this morning and after examining him, she felt that he was post-ictal (the state following a seizure when they are drowsy, disoriented,etc). When she left, I decided to grab coffee. When I got back the nurse let me know he seemed to be coming around. I quickly came in the room and climbed in bed with Alex. In a weak voice he said, "I love you and my belly hurts". I was so happy to hear that boy, I cannot tell you!
The team rounded shortly after. The main things they discussed were whether to increase his seizure meds (we are not), we needed to get down to CT, they wanted to consult infectious disease, and whether to switch antibiotics. After the team left, we had a quiet day. We did have to have an IV started to prep for the CT scan. As the day went on, we noticed Alex talking a little more. He also was not quite as still and stiff. He still will not reposition himself in bed at all, but he is at least moving his arms a little! He was back on his fentanyl pump and stayed awake most of the day, confirming to me that last night's episode was not fentanyl related.
Around 2, we went down to CT. Alex was a trooper as always. For someone with the level of pain pancreatitis causes, to have to travel around the hospital, transfer beds, and go through the CT is not fun. He was so strong. I was very proud of him. Our attending was back late this afternoon to check on Alex and was really pleased with how he looked. He was not as thrilled with the results of teh CT. I have not seen the report, but my understanding is these are the findings:
1. His pancreas is swollen and cloudy.
2. His liver and spleen are slightly enlarged, but ok.
3. He has ascites or free fluid in his abdominal cavity.
4. His small bowel is compressed by all the air and fluid.
5. He has pleural effusions and atelectasis.
6. There is an occlusion in his femoral vein that may be another DVT. (We will most likely be looking at doing more testing in the coming days)
I think that is it! Not exactly what we wanted for results, but hopefully they will help us find the appropriate treatments to get Alex well.
I am sure tomorrow will be a busy day. Alex is still running temps in the 101-102 range. He has not been under 101 today. We are doing labs every 12 hours. While Alex was better this afternoon, he is still a long way from well. Please continue to pray for this sweet boy!