So our saga continues. This is how we spend a good majority of our time now.
Sitting in an infusion center. This although inconvenient.. Keeps him out of the hospital emergency room. Since we are in the learning phase still of how to control and even learn his cyclic pattern, this will be our life. He may still end up hospitalized, and we have still had trips to the ER after infusions, but this helps us through the bulk. This week we are trying a new anti-emetic. We used it in the hospital in March and it stopped his vomiting, but he was getting it every 12 hours. We took him Friday, Saturday and Sunday and he only threw up once each day and kept most of at least one meal down. Which has been the most since this started almost four weeks ago.
Today, with out this medication, his level if vomiting is right back up to 7-10 a day. We now need to figure out a way to get this with some sort of insurance coverage at home. They have offered an alternative.. But my teen would need a third ECG before that is prescribed.. Does this scare anyone else?
We load up on medications. But at what cost to our bodies? So when one like this comes along.. It spooks me. Of course, having a hole poked in his arm every other day is just as dangerous I suppose. It’s all so scary.