So here’s how Gavin’s doing

Gavin seems to be feeling okay today. That's obviously good news, because he had a rough night, as I said earlier. He's currently sleeping, but that's likely just his morning meds.  We're taking it easy this afternoon but plan on walking as the sun becomes a little more skin friendly.  Hopefully, Gavin will wake up still feeling okay, and will be up to going to the park. I don't like to push him too hard, because his body is inherently unstable. He's been doing pretty good for the last couple of years, but it only takes one time. 

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Gavin had a bad reaction to his #IVIG infusion

Gavin gets his IVIG infusion this morning, but I'm a tiny bit concerned. When he had his last infusion on Friday or Saturday, he got sick afterwards. He began not feeling well about an hour after it was done.  He soon became sick to his stomach and needed his anti-nausea medication, in order to make it through the night.  Thankfully, he's feeling better today but he had a rough go of it.  I don't know why he sometimes has bad side effects but not all the time. I'm grateful it doesn't always happen but I wish I could nail this down because if I knew why, I could try to fix it.  Unfortunately, it may just be a Gavin thing and there's no rhyme or reason to it. Hopefully, today's…

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IVIG infusion supplies are late

There's been a pretty major snag today. Gavin's IVIG infusion supplies have not yet arrived. It's been a few months since we've had any problems, and maybe they're out for delivery today, but it's put his infusion on hold.  The deliveries are somewhat unpredictable because they don't come out in the same day each month. Sometimes they're delivered early, sometimes they're late, and other times they're on time.  I have a call in but haven't heard back yet. For that matter, we still don't have his new sharps container that I ordered last week. I'm not sure what's going on.  The pharmacy policy is that expect your order, unless you hear from them.  I've not heard back from them, so everything should be okay, based on their instructions. 

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It sends Gavin into a panic every single time

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…

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Why Gavin’s important treatment was withheld

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…

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Gavin’s having health issues tonight

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…

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