Gavin had his Friday IVIG infusion this morning. Thankfully, the process went on without any hiccups and he actually did a much better job of putting things together. There has been some concern because he hasn't been able to properly set things up and perform his own infusions lately.
Doing a better job today has been a very positive thing and hopefully, that bodes well for the future. We'll have to keep working on this going forward and with any luck, we can continue to build upon today's success.
Unfortunately, that's where the good news ends and the worrisome news begins.
If you're a seasoned reader, you know that we went through a month of hell recently because Gavin's infusions medication (GAMMAGARD) went into a nationwide shortage and it became impossible to get. This was a *huge problem *because this medication is what prevents him from getting sick by essentially replacing his broken immune system.
Anyway, this was a big deal and something that preoccupied us for about a month. In total, Gavin missed six infusions and we only resolved the situation but moving to a new medication.
This was a common topic in June and July of this year. It very much consumed our lives until it was resolved and even a little after because we weren't sure how Gavin was going to react to the new medication.
I stress this because I need to make very clear that Gavin was very aware of this whole thing and this was a big enough deal that it shouldn't easily be forgotten. The medicine is different and the amount he takes is now cut in half, meaning his infusions go much quicker.
This morning, however, Gavin wanted to know why his medicine looks different and why he's only taking 15 cc's instead of the 30 cc's. This caught me off guard and I assumed that he was asking why the dose of his new medication was less than the dose of previous medication. I soon realized that Gavin was unaware that he was on a new medication. He didn't even remember anything that had happened that led to him needing the new medication in the first place.
He forgot everything that had happened and when I tried to explain, he looked at me like I had three heads.
How does he forget something that significant? Of course, that's rhetorical because I know why he forgot. It's the same reason he forgets everything else. For the most part, Gavin's longterm memory is pretty solid. He may need some prompting but he can eventually make the connections and spark the memory.
I'm not sure if this qualifies as a long-term or short-term memory but it's very worrisome that he forgot something this big.
When I reminded him of what happened, he got very upset with himself and began hitting his head and calling himself an idiot. I corrected the *idiot *comment and made him change what he was saying from *I'm such a freaking idiot *to *I just forgot why my meds were different. *
This is part of Gavin's overall decline. It's heartbreaking and yet there's nothing we can do about it. All we can do is try and remain positive while helping Gavin to find new ways of assisting his brain in remembering. Things like visual and or verbal prompts have proven helpful. Perhaps we need to increase the availability of these prompts and see if that helps to regain some of his independence.
