This morning at 9am we drove our hour and a half drive to Upstate Medical to the infusion center. We met with the nurses that our going to be taking care of the boys. They explained the whole process and what to expect. They will most likely start the treatment next Tuesday, still waiting for a call from Dr. Pellegrino for the specific time. They told us it will prolly be a five hour process from start to finish. When we get there we will have to wait to get into a room where they will then have to find a vein that will take the IV and then when the IV is in place they will send out for the medicine to be mixed because it is such an expensive drug, around 5,000 an infusion that would be wasted if they couldn't find a vein. After the orders are sent down to the pharmacy in the hospital, it should take about half an hour for them to be ready. After that they will set up a slow drip infusion starting off at 4cc an hour and raising it 4cc every hour all the way up to 16cc. It should take roughly 4 hours with the IV in. After the infusion is done they have to watch them for a half an hour just to make sure they are reacting well to it, each and every time.
Everyone's prayers that the boys take well and do well with the infusion and that they won't fuss much with the IV will be greatly appreciated!!
I am just very thrilled to start them on ELAPRASE, and get them the needed medicine for their disease and pray they stay healthy happy normal little boys!!
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