Gavin had a massive, massive meltdown this morning

Gavin slept in this morning which is weird in and of itself. He didn't wake up until just before I got home from my morning walk. As I walked in the door, Gavin was working on getting his IVIG infusion ready, and it wasn't going well. It's been about an hour, and I just got Gavin calmed down enough to try working with him on his infusion. Gavin was so angry that frankly, he wasn't safe to be around. Angry is probably the wrong word. He wasn't angry at anyone. I think he was so frustrated with the infusions continuing to leak; he was beyond what he could cope with. I'm glad the kids weren't home because they would have been terrified by his behavior. Gavin was screaming as loud…


Longer needles are needed

Gavin will be resuming his IVIG infusions this morning. He missed his infusion on Friday cause his supplies didn't arrive until late and then he ended up in the hospital. We opted to hold off until today because he was in bad shape and when he was getting back on his feet, we didn't want to put the extra stress on his body. Missing one infusion isn't a huge deal. It's not something we want to do for shits and giggles, but considering the circumstances, it was for the best. I have to call Akron Children's Hospital today because we need to order longer subcutaneous needles for his infusions. His doctor wants to try one size longer to help address the issue of his infusion leaking, requiring frequent resticks. Gavin's…


Gavin’s #IVIG infusion was a very frustrating experience today

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…


It’s a HUGE day for us and here’s why

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.


The best news we’ve had in a month

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…


We finally figured out why Gavin has NOT been able to get his life saving medication and you won’t believe the reason

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…


My wife and I have made a very difficult decision

I haven't heard anything about Gavin's IVIG infusion meds yet and he will be missing his sixth infusion in a row on Monday. As a result, Lizze and I are having to make some difficult decisions. It's completely reasonable to assume that with every missed infusion, the risks to Gavin's health increase. We don't know anything for certain or to what degree the risks increases but I think it's perfectly reasonable to take precautions at this point. With that being said, Lizze and I have decided not to expose Gavin to large groups of people. Things like crowed movie theaters, family gatherings and even the grocery store are needless risks. Again, we know for sure is that he has a severely compromised immune system. We know for sure that he…


The doctor called and I learned something very interesting

Gavin's awesome immunogist just called and wanted to know what was going on. I explained what I was told by the pharmacy and she was frustrated by it as well. Neither of us are sure what's going on and why there's such a delay. She's going to get to the bottom of this, one way or another. I also learned something very interesting. When I asked her about running Gavin's labs to see where he was at, she explained that when we do that, he has to be off of his infusions for three months. I wasn't able to really ask why three months? What that tells me is that if we can go three months in order to test his levels or see how he does on a break,…