Raul and I have been inpatient at CO Children's since Saturday night. We came in through the ER after he had a day of diarrhea and a fever. He has continued to have diarrhea and a fever on and off (up to 102) as well as stopped drinking and pretty much stopped eating. They tried five times for an IV in the ER and couldn't get one, so we got one the next day on the floor from someone who had worked with EB patients before. Then later that same day his IV came out as we were trying to bathe him, so they had to put in another. Today that new IV just randomly stopped working around noon, and it has been out since. Because of that, we are having to feed him Pedialyte by syringe every 10 minutes all night until we can get him a PICC line tomorrow. They had told us he could not get the line until Wednesday, but then the EB anesthesiologist came to try to get an IV (he didn't try as he didn't see any obvious spots), he said he will make it happen tomorrow.
Raul's bath yesterday was a bit easier for him, as he got morphine and ativan beforehand. He had also had versed in the morning before one of the IV attempts, so he was pretty relaxed! He still cried/yelled some, but much less than usual. And it was nice to have two nurses to help with the bandages! We did a bleach tub, but tomorrow we will also be adding pool salt, as apparently it helps some kids not hurt so much in the water.
He has been really cranky, and today very lethargic (he slept most of the day). He did have his esophogram this afternoon, and it showed NO strictures, which is great, but also makes his gagging/coughing more confusing. On Wednesday he will have a brain MRI to check for any abnormalities that may account for his difficulties. We are also still discussing the g-tube for him, as he desperately needs hydration and nutrition. They cannot do an NG tube as it would cause strictures and damage him internally. His vital signs are getting a bit worse as he gets more dehydrated, but most of his labs have ben fairly normal.
I have taken some pictures of him here, but I do not have the cord to connect my camera to my laptop, so I cannot post them yet. I think I will have to run back to the Ronald McDonald House tomorrow, so I might get it then!