My heart is breaking for Gavin

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

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 this morning,  as per the norm.

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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. 

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. 

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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