So Gavin's medication arrived. We went through the newly received supplies and figured out how to draw up the new solution. Previously, we were using 3, 10cc vials for a total of 30cc's of solution.With the new medication, there are 2 vials total. The first vial contains 10cc's and the second contains 5cc's. That makes for a total of 15cc's and exactly half of the solution he had previously been infusing.The total amount of actual medication remains consist at 3 grams.With that out of the way, the bad news is that Gavin likely won't be able to do these on his own, at least for now.I realize he's a bit out of practice but he made mistakes, the biggest of which wasted about 5cc's of the medication. He wasn't even…

After weeks of stress, worry, fear, frustration, anger and exhaustion, we should finally see Gavin's IVIG infusion medication arrive today. We don't have a specific time but it's supposed to be before lunch. I can't totally exhale until they actually arrive because this has been a serialistic nightmare this far. There have been a few times along the way that we were supposed to have had these issues resolved and his medications delivered. I'm absolutely hopeful that by this time tomorrow, we will have out this all behind us.

I received a call from Akron Children's Home Health, the pharmacy we get Gavin's IVIG infusion medication and supplies from. Everything is set and Gavin should have his new medication on Thursday morning. There was a slight delay because apparently, there were special contracts that needed to be signed in order for them to even carry the new medication. We also have a bit of trial and error ahead of us as well. They are sending out the tubing they believe is correct for Gavin's IVIG infusion. The medication is supposed to be infused over a certain period of time. The pharmacist wants to get things down to about sixty minutes per infusion. If the tubing works as expected, they will send out more. If it doesn't, we will try…

I've just spent the last three hours on the phone, bouncing between Gavin's doctor, the specialty pharmacy and insurance. I swear to God, if I had hair, it would be all over the floor right now. After three fricking frustrating and grueling weeks, we've finally gotten to the bottom of why Gavin's infusion medications are still not available. I'm going to skip the nightmarish phone calls and the fact that Gavin's doctor and her entire office is gone for the whole week, without an on call person, according to the answering service. Instead, I'm going to simply explain what caused this giant cluster fuck and it is/was a giant cluster fuck. I just got off the phone after speaking to a very determined person with Gavin's insurance provider.. We couldn't…