Anesthesia called me yesterday to discuss Haven. He had already spoken with all of her doctors and read all of her files. With complications she has had in the past with seizures, anesthesia, and breathing problems Johns Hopkins has decided that Haven will remain in the hospital after surgery. All of Haven's doctors agree. He said due to Haven's high risk and the rarity of her syndrome all of the doctors felt this would be the safest for Haven.
So we agreed. Really, I don't think we had an option. He had already done all of his homework on Haven and even read about ROHHAD. Usually we push for her to come home but I know Haven needs to be watched by the doctors just in case. I have to say I was extremely happy and probably helped me say yes because he took the time to find out about her instead of waiting for us to show up and ask about her.
Haven will still have her Cyclosporin levels checked and will still receive her Rituximab on Friday. They will bring it to her room and administer it as an inpatient.
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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