Gavin finished his second IVIG infusion into his thigh on Friday.  It's now Sunday and he's still having a hard time walking.  😕 He's been on motrin every 8 hours to help with the pain.  A couple readers have asked about a port.  A port is a semi permanent access point, that provides direct venous access.  While I understand why people are asking about it, it's not an option and here's why.  Gavin's infusions are subcutaneous, meaning the medicine goes directly into the fatty tissue and is absorbed.  A port would be useless for this type of infusion.  There are a couple of options I can think of but it's basically just picking the best of the bad ideas but here they are. 1) We could just continue using his…

Just wanted to share that Gavin had the best infusion he's had in awhile.  It was painful today but the process itself took only 1 hour and he's been up and moving around since it ended. Recently these infusions have taken anywhere from 3 - 8 hours to complete. Today however, went really, really well.  Thanks for the thoughts and prayers...  ☺

Please keep Gavin in your thoughts and prayers this morning.  He's about to begin his second IVIG infusion at the new infusion site.  For the second time, he will have the needles placed into his thighs instead of his belly.  While the site is numb,  it's a very uncomfortable process and it took about 3 hours on Monday.  He had a difficult time walking for about 3 days, following his infusion on Monday.  There may have been a little drama involved but he was definitely hurting. He's really nervous and could use some positive energy coming his way... Thanks ☺

Admittedly,  I'm a bit overwhelmed and preoccupied with this whole Childhood Disintegrative Disorder thing.  Some of you have been asking about Gavin IVIG infusion yesterday because I hadn't yet spoken about how the new infusion site went. So here's the deal... Let me start off by saying that Gavin is the bravest kid I've ever met.  The things he endures on a daily basis would be consider intolerable by most adults and yet he never complains about his lot in life.  Yesterday's IVIG infusion was the first attempt at infusing his donor immune system into his thigh, rather than his belly.  In the last 2.5 years of him receiving these at home,  he's had to endure over 520 needles being placed into his stomach area.  That number is low because…

This is a good news/bad news post because there is good news and some bad news.  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 IVIG Infusions 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 immunologist, the likely cause is scare tissue from about 500 needle sticks to the left and right of his belly button, since beginning the at home IVIG 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. …