His asthma and allergies are so severe, he lives on steroids daily, which is terrible for his body, long term.
His doctors are frustrated that he takes so many meds including 3 inhalers, 2 nose sprays, allergy meds, nebulizers, etc. and keeps his rescue inhaler and his epi pen close. Not to mention his monthly allergy injections (2) and his special injection he was finally approved for when he turned 12 called Nucala. Seth’s allergies are environmental. No known food allergies but pretty much everything else. We try to keep his sleep environment as clean as possible but we can’t control the outside world nor will be put him in a bubble.
National Jewish Hospital is a facility in Denver, Colorado that specialize in people with Seth’s problems. His doctors are desperate for him to go so that maybe there is a drug out there that can help Seth like the 20 meds he is on right now cant. NJH has access to drugs and testing that normal facilities don’t. They want Seth there for 12 business days. 2 ½ weeks! It’s considered day surgery in that we do not spend the night. We have to take care of transportation, meals, room and board. What Seth’s insurance does not cover, we have to cover.
A team of doctors will be assigned to Seth as they follow him for the entire time he is there. They will focus on his severe eczema, allergies and asthma. It will be in stages with his team of doctors always with him. He will have multiple upon multiple testing done including head to toe exams, CT scans, skin tests, etc. Again, a lot of it depends on what insurance covers. It’s 8-5 with evenings and weekends off.
His current doctors have never seen the severity of Seth’s allergies. His levels are so high that he is maxed out on a lot of the inhalers (4) that he takes. He takes adult dosages at this point which at 12 years old is so scary for his body. It scares me what long term damage we are doing just to ensure he can breathe normally. He is so used to breathing at such a low lung capacity that when he does have an asthma flair up, it is a life and death situation unlike most ppl that can do a nebulizer or rescue inhaler and be ok.
- Matt Brower
- Esther Low
- Rachel Lindsay
- Richard Borisenko
- Travis Casey
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