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. 

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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. 

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We are facing a tough decision - What would you do? 

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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12 Comments on "HEARTBREAKING: I feel like I’m torturing my son :("

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Most likely feels that its helping is the reason he is not complaining

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Most likely feels that its helping is the reason he is not complaining

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Sorry if it is asking for too many specifics, but what is the difference between going to the Children’s Hospital versus doing the infusion at home? Is it just that the staff have more practice in finding a good spot or do they do the treatment in a different way?

Gavin is being incredibly brave!

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No worries. It’s that he’s been stuck so many times that there’s large amounts of scar tissues.. Doesn’t matter who’s doing it… At the hospital, they would do an actual IV.. Problem again though is that there is so much scar tissue that they can only use one arm and that was getting tough.

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Rob Gorski ugh ugh ugh.

If you do have to go back to the hospital, is there any chance a local hospital can do it instead of going to Akron everytime? Just something to keep in mind I guess.

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That’s not really an option because they need to be equipped to handle autonomic crises… Akron is the closest..

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Sorry if it is asking for too many specifics, but what is the difference between going to the Children’s Hospital versus doing the infusion at home? Is it just that the staff have more practice in finding a good spot or do they do the treatment in a different way?

Gavin is being incredibly brave!

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No worries. It’s that he’s been stuck so many times that there’s large amounts of scar tissues.. Doesn’t matter who’s doing it… At the hospital, they would do an actual IV.. Problem again though is that there is so much scar tissue that they can only use one arm and that was getting tough.

Guest
Guest
Guest

Rob Gorski ugh ugh ugh.

If you do have to go back to the hospital, is there any chance a local hospital can do it instead of going to Akron everytime? Just something to keep in mind I guess.

Guest
Guest
Guest

That’s not really an option because they need to be equipped to handle autonomic crises… Akron is the closest..

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Poor Gavin. Does the insurance pay to have a nurse come do the infusion by IV? My insurance does but I send him to the dr because it gives him an opportunity to walk and do something on his on and interact with people without me and let me be a grown up. the reason i dont like a port is because the port has to be taken care of and covered and my kid is allergic to all tape. when he had his port, the ones with the two lines that just hang, that was the start I think… Read more »
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Guest
Poor Gavin. Does the insurance pay to have a nurse come do the infusion by IV? My insurance does but I send him to the dr because it gives him an opportunity to walk and do something on his on and interact with people without me and let me be a grown up. the reason i dont like a port is because the port has to be taken care of and covered and my kid is allergic to all tape. when he had his port, the ones with the two lines that just hang, that was the start I think… Read more »