The problem though is a catch 22.. Annabelle needs to be cleared for surgery and anesthesia - her cough though is horrible. It's getting progressively worse and clearly more uncomfortable for belle the longer it persists.
Because she cannot be vaccinated, our doctors have concerns about Pertussis (whooping cough). We're scheduled to be tested soon.
Her bowels are another concern. Because of the tube feedings and her diet, Annabelle typically has a BM daily, if not more. Over the last two weeks however, they're becoming more around 4-5 days apart and causing multiple problems, not to mention terrible pain to Annabelle. Eosinophil associated disorders do not only attack the esophagus, they can also attack and damage the stomach, intestines and colon. While I'm hopeful this is simply a change in her GI system and possibly just a side effect from all her medications, it may be necessary to scope and assess the lower GI as well :/ I'm praying with everything that these issues work our bc prepping and the procedure for an upper AND lower scope and biopsy is terrible on Annabelle. My anxiety begins to rise already :(
Otherwise, beside the coughing and no pooping, belle is slow and still but in high spirits. She played outside a bit last night, it was good to see her acting silly with her sissy on their little bikes. The night before, she wouldn't leave my lap for hours and just wanted to look thru photo books over and over and over and over. I had laundry, floors and dishes to do... Instead, I found myself looking at our family shutterfly books, over and over and over! Lol
If we can make it to the weekend, AK and I have special plans for the girls. Any time we plan and/or invest to do something, we end up in the hospital - this week isn't a good start but we're hopeful we make it to the weekend with high spirits and can enjoy some family time before school begins for Mady :)
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