I know I have been talking about Mighty Z starting desogestrel as a possible cure for CCHS (Congenital Central Hypovenitlation Syndrome) and how that I am excited yet nervous to start the drug.
We have been working towards this for well over a year and every step closer we get the more excited and yes nervous I get
I have been having "issues" with being able to get it. Not that my doctors have not been supportive of it just that it is hard to physically get.
I first asked my Aunt who has family in Canada to help me. She was very excited to be part of helping Mighty Z get the medicine, but we found out that you can not get it in Canada so back to trying to figure out who to go to for help.
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So after much prayer and thought I remembered my sweet sweet friend in England. I sent her the prescription and her doctor had it filled for Mighty Z. God truly works in crazy was.
So whats next you ask? well so I emailed both Endocrinology and Pulmonary and told them I have the drug and so we need set up a time to do a baseline on Mighty Z. I don't know if they want to do this as an outpatient or an inpatient so we wait and see. Hopefully the doctors will get back to me on a date tomorrow.
UGH I hope I can sleep tonight..................
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