Friday, December 11, 2009

Tuesday through 3

Today started very well. Our nurse Miss Jenny was able to put some eye drops in her eyes before i woke. I was getting Mikayla up to go to the bathroom and housekeeping popped her head in and asked if it was ok to clean. It was a good time because while there I would freshen her up and treat her skin. They told us it was ok to come out after a few minutes. Mikayla has a pretty tough time getting in and out of bed. Its an air bed about three feet off the ground. We enginered some steps, stools, and a chair to make it easier. Mikayla was at the top of this monstrosity when housekeeping was trying to come back in. I told her we were not ready. I was looking for privacy more than anything. Less than a minute later still trying to get Mikayla into the bed she asked again while popping her head in the room if she could come in and get the bathroom. Out of frustration I told her get it done and turned Mikayla around and set her on the bed. I moved the chair so the girl could get past not realizing Mikayla was on an air bed and that the only thing really holding her was the deflating mattress. When I moved she fell out of the bed on to her feet. It scared the hell out of us both. She was shakin up emotionally and some of her skin was damaged in the process. She took some deep breaths and got the courage to go ahead and try to get back in bed but this time with some assistance from her CNA. Her nurse came back soon after and began to treat her with no problems. She took her time and had a good grasp of when to give breaks and what to say. All was humming along pretty smooth then this horde of beetles known has dermotologist came swarming in. In case you can't tell nobody like them. The bed side manners need some real work as well as their piss poor attitudes. They remind you of snotty high school cheerleaders. Two of them were for sure doctors and the other three really had no business there. Mikayla became frustrated very quickly. It was overwhelming with the crowd hovering. Our nurse took a stand and ran a few of them off. We as parents would love nothing more than to not have to deal with them and do it ourselves. It's always high stress when they come. The poke her for up to a half hour with no emotions. They would rather argue with her than to do what she wants. Mikayla and I talked and we agreed that if the one comes back that poked her leg and made it bleed comes back that I would not let her do anything. When they left Mikayla settled down and enjoyed her 8th Swiss Miss Roll. She has relaxed and been calm for most of the remainder of the time. I got word that they will slow the steroids down and weene her off. As for treatment it looks like will continue much of the same course as now. There is a lot of roosters in the hen house and conflicts though slight exist between them as what to do. In the end only one opinion for treatment is all that matters and that is the opinion of her transplant doctor. She is finding ways do deal with different situations. For example her tounge burns when she eats so she has found that q-tips pressed at the point of the burn makes her tounge feel better. She is couragous and inventive.


  1. She is my hero. You are my hero. You all are. If only I had the power someway to make things better. I feel very small and powerless to change anything. I love you all. Granny Billye

  2. OMG sounds like alot of the people ( dermatolgists) are just heartless.. How can they be that way to anyone especially a lil girl who is already going through enough and they come along and make it worse... Keep being strong Mikayla , you are beautiful and have the best parents any kid could ask for..

    Amy H from WCHR