HEARTBREAKING: I feel like I’m torturing my son :(

Gavin finished his second IVIG infusion into his thigh on Friday.  It’s now Sunday and he’s still having a hard time walking.  😕

He’s been on motrin every 8 hours to help with the pain. 


A couple readers have asked about a port.  A port is a semi permanent access point, that provides direct venous access. 

While I understand why people are asking about it, it’s not an option and here’s why. 

Gavin’s infusions are subcutaneous, meaning the medicine goes directly into the fatty tissue and is absorbed.  A port would be useless for this type of infusion. 

There are a couple of options I can think of but it’s basically just picking the best of the bad ideas but here they are.

1) We could just continue using his thighs but that means he will be in constant pain because by the time his leg feels better, I have to stick him again for his next infusion. 

2) We could go back to his stomach and hope for the best.  There’s so much scar tissue that the last one done in his stomach never finished after running for almost 8 hours. 

3) We could move the infusion site to his ass cheek but based on how his leg has been feeling afterwards, I’d be afraid he wouldn’t be able to sit.  Plus he’s already stated he doesn’t want that..

4) We could go back to the infusion center at Akron Children’s Hospital once a month for the actually IV IVIG infusion. The reason we stopped was because Gavin kept crashing from the drive and would frequently end up in the emergency room, unable to receive his infusion. There’s also the issue of scary tissue from years of weekly or biweekly blood draws and monthly infusions.

I sorta feel like the best option may be to try his belly area again. 

It’s the most comfortable for him but it’s also the most unreliable now and could require an entire day and/or multiple needle sticks until a good site is found.

Either way I feel like I’m torturing him. 

It’s even worse because he doesn’t complain and just sorta takes it.  Sometimes I wish he would scream at me or just complain. 

I’m not sure that area sense but either way,  I can’t say enough about how brave Gavin is.  He’s such a trooper and I just want to do right by him… ☺

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