My heart is breaking for Gavin

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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.

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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Your boys stay in my prayers!!!

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If it wasn’t taking this long prior to the new tubing, wouldn’t it make sense to try the old tubing again before causing Gavin stress by putting the needles in his thigh?  The whole procedure seems to have gone from ‘normal’ to taking an F-ton of time in only a week’s time.  That just doesn’t sound right to me.

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The “old” tubing wasn’t ‘normal’ &#038 was taking a long time. The new tubing &#038 pump isn’t working as it should, either due to damaged tubing/pump and/or scar tissue in stomach. When they get this all resolved with new tubing and/or pump &#038 a new infusion site, things should be going much, much faster than the “old” ‘normal’

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Exactly… Thank you very much for getting it. 🙂
This has been becoming more and more of a problem over time and whether it’s the pump not working properly or the fact that he’s had over 500 needles stuck into the left and right side of his belly button creating a great deal if scare tissue that is impacting the infusion or a combination of the two, he needs to use other sites as well to prevent this from becoming more of a problem.

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You guys are always in my heart and prayers, OK, maybe Gavin has a special spot with a few extra prayers. Keeping you all close in my thoughts.

Guest
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Guest

Your boys stay in my prayers!!!

Guest
Guest
Guest

If it wasn’t taking this long prior to the new tubing, wouldn’t it make sense to try the old tubing again before causing Gavin stress by putting the needles in his thigh?  The whole procedure seems to have gone from ‘normal’ to taking an F-ton of time in only a week’s time.  That just doesn’t sound right to me.

Guest
Guest
Guest

The “old” tubing wasn’t ‘normal’ & was taking a long time. The new tubing & pump isn’t working as it should, either due to damaged tubing/pump and/or scar tissue in stomach. When they get this all resolved with new tubing and/or pump & a new infusion site, things should be going much, much faster than the “old” ‘normal’

Guest
Guest
Guest

Exactly… Thank you very much for getting it. 🙂
This has been becoming more and more of a problem over time and whether it’s the pump not working properly or the fact that he’s had over 500 needles stuck into the left and right side of his belly button creating a great deal if scare tissue that is impacting the infusion or a combination of the two, he needs to use other sites as well to prevent this from becoming more of a problem.

Guest
Guest
Guest

You guys are always in my heart and prayers, OK, maybe Gavin has a special spot with a few extra prayers. Keeping you all close in my thoughts.