So the treatment we were in the hospital for worked wonders. As it did last time. They give him a nice cocktail of meds that really even control the nausea. SO usually by the time we are discharged he is done vomiting. We were discharged on the 8th, and have been vomit free since then. Changed meds yesterday as his doctors believe they can find the right mix to control his CVS. He went from being the worst case that 3 different hospitals had seen to possibly being controllable. I am having a hard time putting any faith in that. Especially since they let this last episode go for 7 weeks.
For the school situation. We have gotten plenty more suggestions on other schools now that we have talked with other parents that are in the same or similar situations. We need to give this one a fair chance. We had thought we were doing pretty well, but they have just informed us that we are too far behind. We are stressing that it is NOT our problem. That most of our teachers have made him repeat lessons from the beginning of the year even though he transferred from another school. Further discussion with at least one teacher has helped with part of that. We are also still learning their system, which doesn’t help. We will continue to try to succeed. I feel that this is still the best option for us.. We just need to get things under control.
Not having to deal with CVS symptoms will help with that.. every other day trips to the infusion center, week long hospital stay.. and just pure exhaustion from lack of nutrition definitely has an impact on what you can do.
