2015 has not been kind so far. We still don’t know what caused Ethan’s abnormal reactions and meltdowns at the beginning of the month. Things are touchy with him right now. We are walking on eggshells 24/7 to keep him calm and well. We’ve reached a critical point in his care and I really don’t know what our next step will be. Ethan has not had ANY food in 2 years, 2 months, and 3 days. His digestive system is struggling. We are now having to give him more than double the Miralax he was getting daily, and give him an enema a week just so his bowels will move. If he becomes backed up we have to do an enema each day for 3 days in a row. We are knocking on the feeding tube door. I don’t know how long we can continue. Ethan’s team of drs. and therapists have recommended a form of Pediasure that you can’t buy over the counter. It’s called Peptide and it’s especially for kids that are non eaters. It’s used in feeding tubes, but can also be given orally. It’s especially formulated for kids with digestive issues. We know that Ethan will drink it because we were able to get one bottle as a sample to try. We have a prescription for this medical food yet our insurance WILL NOT pay for it. We have been denied twice.
The insurance will not pay for it because of how expensive it is. For a case of 24 the price on Amazon is $164.99. 24 drinks, that’s about $7 a bottle. Ethan drinks 12-15 bottles of Pediasure a day because he is a non eater this is his ONLY calorie source. 1 case of 24 lasts 2 days if we are lucky. If this seems unreal see for yourself here.
How on earth is anyone supposed to afford that?
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