Friday, May 11, 2012
It is so much easier to write more details on here than on a Facebook status...I am thankful for each of you who care for us and Jonathan and have continued to pray him through this long journey. I don't have a lot of information to share yet but I can at least let you know what is going on. Yesterday afternoon, Jon's home health nurse came by to change the dressing on his picc line.we have been doing IV antibiotics for the past week and he has been doing fairly well. While we were doing vitals, we noticed that his feet were really swollen and a deep purple/red color. The purple coloring went up both legs to his waist. He was getting increasingly lethargic. He started slurring his speech. His head and body started leaning to the side. The last few symptoms are "normal" for him...usually an indicator that something is wrong or an infection is affecting him. We ent to the local emergency room and spent four hours there. They did blood work and a CT scan of his head. Nothing came back abnormal but he was still not totally stable. They were concerned enough that they wanted to admit him and get to the bottom of what was causing the swelling. We discharged So we could transfer to children's in Denver. It makes more sense to be where the drs know him and can see the changes taking place. He has had a couple more incidences of swelling and lethargy since we got here. The plan and thought right now is that whatever is causing the problem is causing an adrenal crisis. He is being treated with IV steroids for that. They changed his antibiotic to a more broad spectrum antibiotic. The question now is whether he has an infection causing the issues or are there changes in the brain. We will be doing the MRI sometime this evening to rule that out. The theory is that for some reason the systems are not communicating with each other effectively.. When he stands the blood is traveling to his feet but not returning out of the feet. The same thing is happening in his hands as well. I will update again as we find out new things.
Posted by Kelly Stockwell at 12:50 PM