My heart is breaking for Gavin

Like the title says,  it’s been a heartbreaking day for Gavin. 

I can’t say enough about Gavin.  He’s such a brave kid and deals with more than most will in a lifetime and yet he never complains. 

Gavin had his IVIG infusion this morning,  as per the norm.


We have brand new tubing which is supposed to significantly expedite the process and yet for the second time this week,  his infusion has been an absolute disaster. 

Read This  Gavin's #IVIG infusion was really late and that always makes me nervous

I started Gavin’s infusion about 9am this morning and as of 2:30 PM,  he still has over 13cc’s left to infuse. We are almost 6 hours into the process and it’s simply not working. 

In an effort to fix whatever the problem is,  I’ve requested a replacement pump be sent out. 

I also spoke with his immunologist about this today and we are suspecting that there is simply too much scare tissue in his belly.  We have to move to a different area of his body and Gavin’s is not happy. 

Read This  Gavin's favorite place

Beginning on Monday,  we will begin infusing his IVIG into his thigh. 

I wanted to pull the needles and finish the infusion in his leg but Gavin wouldn’t even consider it. 

Please keep Gavin in your thoughts as I get this situation resolved. 

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