hospital

managing a smile

melanie was admitted to the hospital today. trying to get a handle on her skin problems. right now she is wrapped in smelly medicine, wet gauze, blankets, and a mesh dressing. not a pleasant combination for anyone, but add to it her neuropathic and peripheral pain and we've got an unhappy girl. we had so much fun in the playroom before they wrapped her up; she was so sweet and happy and having fun. she was so tough through getting the medicine slathered on her, getting her arms and legs wrapped in wet gauze, blankets, and mesh. it was obviously very uncomfortable for her, and her eyes kept welling up with tears but she was holding them back. however, she was so tired and when they asked her to stand up so they could wrap her back and chest she couldn't hold the tears anymore. she cried quietly into my shoulder as they finished up. she has been a real trouper, trying to forget about it but cries in pain about every five minutes. she says it really hurts her tummy. they were going to wrap her whole face and head but decided against it at least for tonight. the plan is to come in every three hours, unwrap old wraps, and wrap her with new ones. this is done every three hours around the clock. they had never wrapped a kid with so many tubes before, so that was a challenge, but we made it work. we will do the changes every three hours for a while but we may call it quits for tonight around 11 so she can get some sleep then start over again in the morning. if she misses too much sleep it will cause all kinds of trouble with all the other medical issues; so we will try to not let too many other issues get out of hand while we try to fix one.tomorrow neurology will consult. most likely the intense wet dressing wraps (and in her mumified state she will not be able to scratch) will help her skin look better. however, it is just a band aid and they are afraid everything will return once the intensity is stopped. so neurology is supposed to be deciding between three different meds to start her on to help longer term (substance p, methadone, and remeron). not sure on whether we will be doing a skin biopsy or not, neurology will also be deciding that.i think we are in for a long night. hopefully we will both get at least a little sleep. my head is already hurting.