I have some good news and some bad news

This is a good news/bad news post because there is and some .  I’m going to begin with the bad news because it will make the good news make more sense. 

I shared earlier in the week that Gavin’s haven’t been going well. 

In an attempt to counter this issue, we switched to larger bore tubing. This should have increased the speed with which the infusions took place. 


Unfortunately,  after consulting with his , the likely cause is scare tissue from 500 needle sticks to the left and right of his belly button, since beginning the at home a couple years ago. 

The good news is that there is a solution. 

The solution is to place the infusion needles in an alternate location.  There are currently two locations possible and neither are pleasant.

The first possible location is in his upper butt/lower back. The final location is the outside of his upper thighs. 

Gavin’s not excited about either. 

The only other option is to return to the Akron Children’s Hospital infusion lab in order to have the 6 hour IV infusion done once a month. 

Gavin has almost no body fat which makes these subcutaneous infusions rough. 

He has elected to use his thighs on Monday and I’m not sure how that’s going to go. 

I will say that Gavin’s got a great attitude about this change and while he’s scared, he doesn’t want to go back the actual IV infusions at the hospital.

We’re going to numb his leg up really good before trying this new location.

With any luck, this will go smoothly and at least relatively pain-free…. ☺

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