Tuesday, December 15, 2009
This post may jump around a bit, but you should get the overall picture. We still are not 100% sure what is going on with Mikayla. Trying to get an answer has become an unspoken challenge around here. There has been several disciplines of doctors in and out and each has there own opinion. When Mikayla's "rash" started we went to the hospital three days in a row expressing our concerns only to be told that it looks like GVHD and to put cream on it. They finally took us seriously when small blisters began to form on her legs. That was around midnight and the next day everything changed. Her skin began to rapidly transform and withing two days she was covered in red skin with huge blisters. Dermatology was the number one team involved at that point. They really didn't do much besides make Mikayla cry. Mikayla has a synthetic line that comes out of her chest where she receives fluids and medicine called a hicman. Because of the importance of that site wound care treated it. After a few days the site looked great. Not perfect, but compared to the rest of Mikayal's body we couldn't ask for more. So, there began talk that maybe we should treat her body like her hicman site was being treated. Dermatology did not agree. Instead they continued a course of coming in and popping blisters. On Sunday finally somebody put their foot down and things changed. It was agreed that the burn care nurses and doctors would get involved and that dermatology would back off. We were told that the burn team would come in late Sunday and sedate Mikayla and begin to debride her body. Mikayla is at a huge risk for infection so instead of a whirlpool it has to be done manually. They came in and while the nurse was still applying the sedation medicine in her hicman they began to work. Giving no time for the sedation to start its effect of relaxing you. For more than thirty minutes Mikayla endured so much pain her eyes and tongue were bleeding from crying. Very, very cruel act. They only had the heart to do her legs. They muffed the whole thing up. We were not in the room to realize that they proceeded as they did with little concern for her comfort. Rea blew up! She got on to every doctor and nurse that was involved. We got apologies, but that is not what we are after. The conglomerate known as the team decided to change methods. They are supposedly going back through her complete history and trying to dig deep and find out what is the root cause for her condition. Monday Mikayla was given a complete day of rest. Nobody got to poke her. She called during the night and sounded great and her mood was upbeat. Today she will be heading to the O.R. to be put to sleep so that the burn team can begin to extract all her dead skin. Why they didn't do that in the beginning I don't know.