This is Epidermolysis Awareness Week- spread the word.
Elle had her biopsy today. She had 5 not so little holes punched into her left thigh. The tool used to core the tissue is even called a punch. Don't worry, she got plenty of local and systemic pain control and did not seem to have ill effects or signs of additional pain. The information from the biopsy (which we do not have yet, but will in a few days) will help Elle and the doctors in planning her care and in research efforts to help other children.
Elle slept much of the day today and I am going to see her tonight right after this post. She has maintained her blood pressures without adjustments to her meds or additional fluids beyond platelets. Her WBC and ANC counts continue to maintain, and we will not have more culture results until tomorrow. She has gained quite a bit of weight now; it just took a day. She is 7.1kg up from 5.9 yesterday.
Thanks for all of the continued antifungal/yeast ideas. I didn't know about garlic- I wonder how we can incorportate that. She isn't tolerating tube feeds yet, but I'll propose it. I have been putting coconut oil on her here and there, but I didn't know that it caused the membrane to split. That is interesting. Yes Ma, I am getting your comments now and they are very sweet, thank you...Oh and she is on Ketaconazole topically.
The Vikings were visiting the hospital again today at a halloween party in the cafeteria and Chloe got a photo with Freddie Brown who visited Elle before. She ate cupcakes and apple cider and became nuts for a little while but she had fun.
|Chloe asked for a rainbow spider...|
|...and so she got one|
|Grandpa even wanted manly one|
|Dad asked, "Does this hospital have a pest problem?"|
|Chloe jumped at the chance to be goofy in the photo booth|
|A magic trick|
|Feeding her dad -looks like he's not as enthusiastic about this|
|Chloe shy all of the sudden with Viking cutie, Freddie|