Read more about the article Unfortunately, I had to teach Gavin a lesson this morning
Gavin / IVIG Infusion / My thoughts

Unfortunately, I had to teach Gavin a lesson this morning

Unfortunately, Gavin's having to learn a lesson this morning. Every Monday and Friday morning, Gavin needs his IVIG infusion. This is something he'll have to do for the rest of his life. It's not something that gets better and it's only likely to get worse over time. We have a rule that Gavin must do his IVIG infusion first thing in the morning. He's supposed to eat breakfast, take his meds and on Mondays and Fridays, get his infusion going. This morning he ate breakfast, took his meds and went upstairs to play his tablet. When I realized the time, I called him down and questioned him about this. As soon as I pointed out that he had not started his infusion, he immediately reacted by punching himself in the…

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August 13, 2018
Read more about the article Gavin’s doing better in this area
Gavin / IVIG Infusion / My thoughts

Gavin’s doing better in this area

I know Gavin struggles in most areas of his life. That's just the reality of the situation and I won't sugar coat or spin that. It's frustrating as his parent because I find myself having to micromanage is life and I don't want to be doing that. Having said that, I have a spot of good news. Gavin is doing better with his IVIG infusions. When his infusions started up again, after the medication shortage issues, he couldn't do his infusions on his own anymore. Maybe too much time had passed and he forgot how to do them properly? Truthfully, I don't know. I'm relieved to share that the last few infusions that have been done, he's done entirely on his own again. He's doing a very good job and…

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August 12, 2018
Read more about the article Emotionally absorbing another heartbreaking struggle, it must be Monday
Autism Parenting Heartbreak / Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

Emotionally absorbing another heartbreaking struggle, it must be Monday

As with every Monday and Friday for so many years now, Gavin needed his IVIG infusion this morning. Once again, Gavin put the supplies together in order to receive what essentially amounts to an antibody transfusion. This is only necessary because his body is unable to produce the necessary immunoglobulins needed to fight off infection. In other words, his immune system is severely compromised. This morning was no different than all of his more recent IVIG infusions. He struggled to put things together properly. He's been struggling to draw up the medication, without wasting a good amount of it and spent a large amount of time freaking out over the entire process. He's been struggling more as time goes by. There was an interruption in his infusions for two and…

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July 23, 2018
Read more about the article Gavin’s #IVIG infusion was a very frustrating experience today
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

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…

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July 12, 2018
Read more about the article It’s a HUGE day for us and here’s why
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

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.

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July 12, 2018
Read more about the article The best news we’ve had in a month
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

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…

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July 10, 2018
Read more about the article We finally figured out why Gavin has NOT been able to get his life saving medication and you won’t believe the reason
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

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…

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July 9, 2018
Read more about the article The doctor called and I learned something very interesting
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

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,…

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July 6, 2018