Hi folks! An early update and a request for some brainstorming ideas: all seems to be in an upward tend at this time! I am hopeful that we will be released to home care in the next day or two - we just have one final hurdle to leap. The continued medication for mycoplasmic pneumonia, along with steroids and nebulizing treatments for asthma, have my sons lungs back to acceptable function and OFF oxygen! The atypical Stevens Johnson is a bit more stubborn... it is all in healing mode, just a slow process. He has lidocaine gel to make urination possible, and eye drops that are slowly but noticeably improving the eye inflammation and breakdown :) what we are struggling with now is nutrition and calorie count. Eating has become and continues to be a very difficult process due to the extensive mucositis of the lips, mouth, and throat. He is on oxycodone every 3 hours just to allow him to eat soft foods but it is a slow process. Even at that he was only able to eat 50% of his required calories yesterday. The Drs would really like to put a feeding tube in and send him home with it so I can easily provide adequate sustenance without him having to eat, but because of the horrible experience he had the first time we attempted this he is understandably willing to do anything to avoid it. Im looking for ideas of soft foods that are high in nutrition and/or calories and without salt, sugar, or spices (that irritate the open lesions) would be most welcome. Any and all suggestions are welcome! We are talking about things like scrambled eggs, plain oatmeal, canned pears, instant breakfasts, plain yogurts, etc. High calorie suggestions would be great - he is being encouraged to try almond butter or nutella straight from the jar if it works for him! Cheesecake, pudding, jello, milkshakes. ... you get the picture. He was even able to work slowly through a tuna sandwich on white bread the other day... any other mild & soft meat suggestions in sure would be super welcomed by my little carnivore! Thanks in advance for your kindness, your thoughts, and your suggestions :) you have all been an uplifting gift through this!
Posted on: Tue, 28 Oct 2014 19:20:10 +0000
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