Each infusion provides him with an acting immune system for about a week. The timing and space between infusions are purposeful. We want to provide enough overlap that should there be a delay in a single infusion; he will be okay. This buffer of sorts has come in useful on many occasions over the years.
The boys had a great time at their Grandparents house last night and today. They've been rather quiet since they arrived home. I haven't heard any fighting and that's awesome. We're going to do dinner and then Gavin's IVIG infusion, before moving on to bedtime. Hopefully, Gavin's IVIG infusion goes well and without any side effects.. ☺
I told you the other day that I sent Gavin's information into Make-A-Wish, after waiting for him to decide he would be okay with possibly having a wish granted. I replied to the email I received from Make-A-Wish, with the requested information. After a day or two, I got a message back because my email had been bounced. Perhaps the person I was working with, no longer works there. Maybe I was bounced back by security. It doesn't really matter, because I had to resubmit my inquiry yesterday. I received a confirmation back and simply need to wait for them to contact me. I'm not sure what happened, but in all fairness, the initial inquiry was end of last year. The hold up was basically Gavin not wanting to do anything. We didn't want…
Gavin's IVIG infusion is well underway and aside from a few hiccups, it seems to be going well. The hiccups I'm referring to are the result of one of the needles in his stomach leaking. This isn't a huge deal in reality, but as far as Gavin's concerned, it's the worst possible scenario. Sometimes, part of the solution will leak out from underneath the tape. This will send Gavin into a total panic like he experienced this morning. It's easily fixed, and worst case scenario, the needle needs to be reinserted. I don't blame him for not liking that, but it rarely comes to that. Anyway, we fixed the leaky needle and his IVIG infusion is continuing without any further issues. He decided he wanted to do this procedure in…
With everything that went on Monday, we weren't able to get to Gavin's IVIG infusion. He's supposed to receive these infusions on Monday and Friday, but sometimes it doesn't always work out. Getting this done a day later isn't a huge problem. There is some overlap in this schedule, and that's by design. We never make it a habit of putting these infusions off, because they are a very serious thing. Without receiving these donor antibodies, Gavin's body wouldn't be able to fight off illness. It's a pretty big deal. The main reason we pushed his IVIG infusion back a day this week, is because he was complaining of reflux. These infusions provide him with the immune system his body naturally lacks however, it takes a lot out of him. If he's not feeling well, we try…
You may recall that Gavin sorta refused his IVIG infusion this morning, because he had a mission to go on first (see Why I'm worried about Gavin today). We were simply going to do his infusion tonight, because it wasn't a huge deal. It was the fact he wanted to put it off, and the reasons why he wanted to put it off, that concerned me. After dinner, he was getting ready to get his supplies together, and he got hit with some major reflux. It put him down for an hour or so because he wasn't feeling well. I decided that we would put his infusion off until the morning, because he's already struggling and the infusion is pretty rough on his body. Once the reflux subsided, he was hit…
Gavin had his IVIG infusion this morning/afternoon. Everything finished up fine, but it took a really long time. What was different about this particular infusion was that Gavin wanted to hangout in his room during the procedure. This is highly unusual because when he's undergoing this procedure, he hates to physically move. He's afraid that the needles will move. This morning however, he said he wanted to move upstairs and watch a movie on his tablet. We were happy to hear this because he needs to be able to walk around while receiving his IVIG. He doesn't have to move around, but it's a good thing that he's able to get up, and move around without being afraid. This was a big step forward. ☺
