Gavin’s #IVIG infusion supplies never showed up and that worries me

Without going into the backstory again, Gavin is on IVIG twice a week because of his severely compromised immune system. You can read that backstory here.

We received a notice from his insurance that they were no longer working with his current, longtime supplier and would be switching to a new company. This is potentially very problematic because this needs to run like a well oiled machine or there can be delays in his deliveries and that could potentially be life threatening.

Lizze and I haven’t even had a chance to call about this and we’re already having a major problem. Gavin supplies were due to arrive last Friday and they never did. They also never arrived today and that means he’s missed his infusion.



He’s missed quite a few infusions in the past but never on purpose. There were medication shortages or supply interruptions behind those. This time, I can only assume that it’s related to the change and I need to call someone and get this fixed but I’m not sure who to call.

I’ll probably call his current supplier and find out what they know. I don’t know the name of the other company and have no contact information either.

Gavin doesn’t like missing his infusions. It’s important to remember that he’s 19 on the outside but between 4 and 6 years of age on the inside. He gets scared and will keep asking about the delay or when his supplies will arrive.

I fucking hate bureaucracy because changes like this can create turmoil and never go smoothly. I need to figure out what’s going on today because he cannot miss these infusions.

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  • Such gaps in the care of delivery of meds is not excusable. Don’t these people have consciences or brains?

  • BeckyW says:

    I hope everything gets straightened out. BTW, have you all tried to get guardianship for Gavin? Isn’t it potentially a problem if you don’t? Just wondering. I talk about your family with my husband and he wishes we lived close by so he could help. And my sweetie has been having health stuff although he’s on an upswing.

    (Oh, I think I mentioned I had knee replacement surgery? It’s pretty darn grueling. A week of pain and no sign of let-up. I’m actually trying my TENS unit on the muscles around the knee and it seems to help.)

    • Facebook Profile photo Rob Gorski says:

      I’ve been wondering how your surgery went. Are you doing okay? As for guardianship, it’s still a process. We do have power of attorney and medical power of attorney, so that’s a start. I’m so glad your hubby is on the upswing.. Take it easy, get some rest and I hope your recovery is quick. ☺

  • Sophie says:

    Is this the sort of task that Lizzie could undertake?? Surely it could be done from bed which takes stress from you. ???

    • Facebook Profile photo Rob Gorski says:

      Of course she could. I’ll probably do it it though because accomplishing something helps me feel better about everything. There’s much I can’t do anything about, but when I can fix something, I really like to fix it..

      • Pony says:

        But I think Sophie’s point was had Lizzie taken care of this you wouldn’t need to fix it. Then that would be one less thing on your priority list as you mentioned the other day in one of your posts. I understand that she is in pain with migraines, but this easily should have been something she can take care of to help you out

        • Facebook Profile photo Rob Gorski says:

          Everyone needs to take a step back. I appreciate the concern, I really do and perhaps I wasn’t clear. This literally just happened. There was nothing to do until today. While I hate that they do this, they always deliver his supplies on the day he’s actually out. For example, his last infusion was Friday and he’s was out of supplies for Monday’s Infusion. They have always scheduled deliveries for Monday (the first infusion he doesn’t have enough supplies for). It’s automatic and while I’ve asked for an overlap, it’s an insurance thing, at least that’s what my understanding is. They can’t refill until he’s actually out.

          This has absolutely nothing to do with anything Lizze has or hasn’t done. I get where you’re coming from but Lizze feels horrible enough on her own about her limitations, reading comments like this, make things worse. I know it’s not meant to be a negative comment but it comes across that way. Maybe I wasn’t clear in my post? This has nothing to do with Lizze or myself. We have zero control over this. We didn’t know we had a problem until last night when the shipping window was closed. This morning was the first time we could do anything about it.

          Sophie’s point was that maybe Lizze could make the calls, so it’s one thing I don’t have to worry about. I simply replied that I want to take care of this because there are so many things I can’t fix and I feel like a failure. I can fix this and that helps me to feel like I’m making a difference. It’s positive for me to take this on. Lizze could absolutely do it but there’s no need.

          Just so I’m clear, I’m not upset. I’m very protective of my family. Your comment really feels like you are blaming Lizze for this. It’s not helpful and it’s simply inaccurate.

          No worries. I just wanted to clear that up. Thank you for caring… ☺