I’m grateful this infusion went as well as it did

Gavin’s IVIG Infusion went pretty well today.  I was able to get it started before taking the other boys to school. 

The entire process was roughly 2 hours and then he slept for a few hours after…

It’s a a bit overwhelming to know that we have a lifetime left of these to go. This will never fix itself and will likely continue to get worse over time. 

For now, I’m just grateful this infusion went well and we’ve lived to fight another day.



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  • Raynette Jones says:

    i am so glad it went well. It is daunting that it is a lifetime process. since my kid gets ivig as well i do understand what you are going thru and i know you are just as grateful if not more than i am that at least we have access to ivig since we live in the US and have insurance. i looked at one of my blue cross blue shield statements and saw how much the doctor was paid and the visit costs and the medicine costs and am blessed my son was able to get it. with his Behcet’s (autoimmune diesease) he has not been mouth ulcer free in at least 6 years for even a day and we are talking about at least two bad ones up to 12 that go down his throat. with your little guy that gets mouth ulcers you no it is horrendous and no medicines have ever touched it. He has been mouth ulcer free (or just had one that hurt a little and went away like a regular person) since he got out of the hospital april 4th. it has been a miracle. Also,all that panicing i was doing about his urine being tea colored it was from dehydration!!!!!! he really does drink a lot though. they gave him fluids today until his urine was almost clear and also did some tests that at first glance say everything is ok but he sent some more tests off to be sure (and to make sure I wouldnt lose my mind over this). Also, great news that i do have the offer letter in hand now for the new job that starts june 2. it is less than a mile from my house and it is a great job and i dont have to worry about may 22nd ivig and how to get my son there as i wont have started work yet. thank you all for your prayers and thoughts and just being there for me while i was freaking out. i am telling you that yall have really made a difference for the better in my life. thank you