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. …

Poor Gavin is not having a good day. My heart is breaking for him.

I mentioned earlier that we were all excited because Gavin got new tubing for his IVIG Infusions that have historically reduced the infusion times significantly.. Unfortunately,  that didn't prove to be the case today.   In fact, his infusion took almost 3 hours to complete and that's pretty close to the record for longest infusions I can remember. It was also really uncomfortable for him as well. He did manage to hold up really well but this sorta killed the excitement of the new tubing. It's possible it was just a bad placement of the needles and we'll see how things go on Fridays morning.

Tonight's posts will have to do with some changes that are coming. The  two changes that will be discussed, beginning with this post and ending in the follow up a few hours later, should bring about positive results.  In this post, I wanted to share a change that is being made to Gavin's biweekly IVIG infusions that should improve his experience.  Let's get everyone caught up.  For starters, why is Gavin on IVIG and what does it do? I'd have to look back for the exact date but roughly 4 years ago, it was discovered that for some unknown reason, Gavin's immune system had become permanently and severely compromised.  No one has any idea what happened or why but there it is.  As a side note, this happened about the…

Gavin's IVIG Infusion is not going well for him. He keeps having to go to the bathroom and one of the two lines, isn't really moving.  In having him stay in his room because it's close to the bathroom.  Keeping him in his room was necessary because he'd already fallen up the stairs while racing to the bathroom a little bit ago. It's simply too dangerous.     I just want to get him through this and out the other end of the tunnel in one piece.