Gavin’s 30th IVIG Infusion: The good, bad and scary


Gavin had his 30th IVIG Infusion this morning at Akron Children’s Hospital.  For some reason, I was thinking we were already over the 3 year mark but we looked it up while we were there and it’s exactly 2.5 year’s today. 

He’s had 30 infusions so far and still has a lifetime left to go.

Gavin seemed to tolerate the infusion pretty well today and that’s the good news.  He didn’t crash or need to go the ER today and that’s really good news as well. 

However, along with the good comes the bad. 

The bad news is that Gavin’s right arm is too scarred to receive any more infusions.  His veins have become lumpy and very difficult to stick on his right arm. We had switched to his right arm about a year ago because his left arm had become too scarred to use. 

Unfortunately, we had to switch back to his left arm this morning because we didn’t have a choice.  It was a bit more uncomfortable for him because he’s pretty ridged in his routine and his routine for the last year was that he got his infusion in his right arm. 

He ended up adjusting pretty well and completed the process without much trouble. 

The really scary news is that he’s lost another 2 lbs since last month, despite significantly increasing his caloric intake. The other scary news is that it’s possible that he may have to do the sub-q IVIG Infusion twice a week because of the size of his dosage. 

We have to push 60cc’s of medication sub-q and that’s a lot of fluid.

The other option is to have multiple infusion sites per session.  Basically, we would stick him once and infuse part of the dose and then stick him one of two more times for the rest. 

Gavin and needles are mortal enemies and do not play well together.

I can’t imagine him being okay with multiple injections during the second session.  This is why it may have to be twice a week. 

Right now Gavin’s in good spirits and Lizze is letting me take a short nap.  I’m so tired but I wanted to let everyone know what going on and how everything went today before I close my eyes. 

Thank you for all the love, prayers and support.  🙂

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Philippa Connell

If you’re doing injections so often, is a port not an option for him?

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