There are 14 reasons why I can’t stop worrying right now

I’ve spent the morning on the phone, trying to get ahold of the pharmacy responsible for delivering Gavin’s IVIG infusion supplies.

I’m not content waiting to find out when his medication will arrive. This is too important to let happen on its own time frame.

After a few attempts, I finally got to speak with a person at the pharmacy a little bit ago.

As usual, they were very nice and seemed to be equally frustrated that we don’t have Gavin’s medications yet. This person went over what was going on and it’s safe to say that anything that could possibly go wrong, has and continues to go wrong.

Let’s just review what’s happened so far.

  1. There is what appears to be a manufactured (purposeful} nationwide shortage of GAMMAGARD.
  2. Immunology replaces the unavailable medication with a different concentration of the SAME medication and sends it off for approval.
  3. Insurance eventually approves the change but someone screws up and authorizes the incorrect pharmacy.
  4. Immunology has to go through the approval process again and make sure the correct pharmacy is authorized but insurance is not returning calls.
  5. Everything finally gets approved and sent to the correct pharmacy.
  6. My calls to the pharmacy go unanswered and messages not returned.
  7. When I finally get through to the pharmacy, I learn that the order they received was illegible and they had to put in a request for a new copy.
  8. They are currently waiting on the new order to come through.
  9. Once they receive the new order, they have run everything through insurance once again because the wrong pharmacy had been previously approved and they need to make sure everything is correct.
  10. Insurance is once again, slow to respond.
  11. Once everything is approved, they will order the medication.
  12. Assuming the medication is already or soon to become available, it will be scheduled for delivery ASAP. No, I can’t go pick it up. That’s not an option.
  13. When asked about the time frame, the response was we have no idea.
  14. Gavin has already missed four infusions in a row and we’re heading towards number five now.

We have nothing to do but play my least favorite game of hurry up and wait. I hate that game but there is absolutely nothing else we can do right now.

This has proven to be a giant cluster fuck. I can’t think of another way to describe it.

Gavin’s still feeling okay and that’s a blessing. He’s blissfully unaware of the concern. He basically knows that he hasn’t had to stick needles in his belly for almost two and a half weeks now. In other words, this is like a break for him.

For me though, it’s a nightmare that I can’t stop worrying about, regardless of whether I need to worry or not.

I’m going to try and make the best use of this colossal fuck up and see if his doctor will call in an order for bloodwork. It would be beneficial to know how Gavin’s body is reacting to not having these infusions for a couple of weeks.

The only way we know where his levels are at naturally is to withhold the infusions and let the donor immune system burn off.

We are there right now and this is not something I would want to do on purpose. Since we’re here anyway, let’s make use of the opportunity to see where his levels are at.

Doing something like this and gaining knowledge that will help us better understand Gavin’s condition, will help me feel better about a bad situation. It also means that we don’t have to purposefully do this in the future.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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kimmy gebhardt

I’m curious- if the cluster-f continues and the pharmacy can’t deliver until whenever would it be possible for Gavin to get an infusion at the hospital like he used to do?


Why wouldn’t you be able to pick it up once it arrives to the pharmacy?