Update

Things have changed drastically since our last update. We received a call from his nurse night telling us she thought it was best that we got here as soon as possible. Laura and I drove through the night and got into Cincinnati about 5:15. When we got to the hospital there were around 10-12 nurses and doctor's flowing out of Daniel's room and all of their faces told us all we needed to know immediately. Daniel was not doing well. In fact he seemed to be on a downward spiral that was reaching the bottom as we got here. He has been having trouble with diarrhea, breathing, fevers, seizures and everything has just come to a peak and it seems his body has just said enough. We sat with him as the doctors and nurses did everything they could to stop his worsening trend. They brought in an osciallator as well as the nitric to help turn things around. His heart rate and oxygenation levels dropped the lowest I have ever seen them, but after these machines were hooked up and some different meds, he finally "stablized". I use that term very loosely as Daniel is still probably the sickest he has been yet. They are running every test imaginable and doing everything they can do nail down the cause of Daniel's episodes. One thing that continues to be a major problem is he is unable to use his right lung for the most part due to the fact that the pulmonary artery is pressing the airway down. The are going to look at options to take care of it after they get him to a better place than he is now. We do know that Daniel would probably not be where he is right now if it wasn't for the staff here at Children's. He was fortunate to have one of his nurses that has been with him since the beginning last night and knew what to do and who to call as things got worse. Right now they are trying to put in another PIC line as they will need secondary access to provide him with consistent care that doesn't include sticking him every 20 mins. He is very swollen right now and the neurologists has told us that his brain is undergoing some swelling as well. I am going to keep everyone as updated as I can even multiple times daily if need be as I know there are a lot of concerned people that care about Daniel's recovery and survival, and for that we thank you.