here’s a more formal explanation of everything that’s happened & some updates since ive been pretty…

here’s a more formal explanation of everything that’s happened & some updates since ive been pretty vague and scattered the past couple days. sorry it’s so long.

at India’s appointment her doctor was really concerned about how junky her lungs sounded and her lacking weight gain mixed with other gastro related issues. he said it could just be reflux like i thought, but he wasn’t really convinced so he ordered the blood test and chest xray. the chest xray showed significant build up of mucus in her lungs, not just fluid that could be present in a bad case of reflux. what i didn’t know at the time was that her doctor had sent her blood to be tested for cystic fibrosis mutations, which did come back with positive presentation for one of the more uncommon mutations for cystic fibrosis.

that alone isn’t a definitive diagnosis of cystic fibrosis, she needed a sweat test and further blood analysis. since it’s already been 3 months her doctor wanted us to be admitted to a cystic fibrosis specialty hospital asap so he sent us to be admitted at the local hospital to then be transported to Seattle Children’s CF Program.

so we got to Seattle on the 13th, she was admitted and they started running more blood tests. yesterday, she had her sweat test and started pulmonary therapy and nebulizer treatments to clear her lungs and get her breathing better.

this morning we met with her care team and went over all the tests that have been run, what the results were and we did receive a formal diagnosis of cystic fibrosis. despite her seemingly severe symptoms they assured me that she’s doing really well considering the late diagnosis and that once her care routine is established it should be fairly manageable and she can return to living her happy baby life. she’ll be at the hospital for a couple weeks at least to get her feeling better, gaining weight and so that we can learn how to care for her.

her treatments and therapy have already helped a ton, we have another scan tomorrow to check for progress but she’s coughed up so much mucus that i cant even believe that was all just sitting in there, let alone that there’s more of it. she’s also receiving antibiotics because her white blood cells were elevated which is probably because of a mild lung infection. our next steps are establishing a nutrition plan which might include an ng tube temporarily and getting her started on some supplements to help her properly digest and absorb nutrients in her food.