Gavin got really sick tonight

We had some moments today but overall, I feel like we had a good day. I wasn't feeling quite as overwhemled as I have been and I was able to get some groceries delivered this afternoon. I feel very lucky to have had that all work out today. Unfortunately, that's where the good news ends. Gavin woke up very early this morning vomiting. He dealt with it on his own and didn't wake me up until afterwards, so I want much help. I gave him something for the nausea and he was able to go back to sleep. He was very, very manic today and it was a bit much. Truthfully, he's absolutely harmless and it's more annoying than anything else. He just sorta wears me down. Throughout the day…

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I’m seeing behavioral changes and some are concerning

I wanted to devote an entire post to talking about how Gavin's doing. I haven't really updated in a little while because it's been pretty much status quo. That's not a bad thing but unfortunately, it can't last forever. Gavin is officially off the Clozapine and seems to be withdraw free. That's a very good thing. He needed an extra step in the weaning process and that seems to have eliminated the negative symptoms from a week ago. The issue now is that Gavin is unmedicated and not easy to cope with. It is however, what I knew would happen but I didn't feel I had much of a choice. I thought I would share some of my observations in regards to changes in his behavior. The only way I…


Keeping my #immunocompromised son safe from #COVID19 isn’t easy

We survived the day and I feel pretty good about that. I was able to get the boys school work to and from the school this morning and had my video conference with Gavin's doctor. The morning went off without a hitch. As far as updates are concerned, the only major one is what we decided to do with Gavin's meds. Basically, the conversation with his doctor revolved around how to handle Gavin's Clozapine, while we're on total lockdown, inside the COVID19 pandemic. Clozapine is used to treat Schizophrenia and it works well. It's also among the most tightly controlled medications in the United States, requiring blood work before every refill. The concern is that in order to maintain the medication, I would have to take Gavin to have his…


A super quick but important Clozapine update

A quick follow up on the status of Gavin's Clozapine prescription. I had mentioned last week that we were trying to get his Clozapine script approved for a 14 day supply at a time. Gavin's numbers have been stable for the last 6 months and he's eligible to move to the new script. We just needed to make sure the powers that be approved it. His refill arrived late last week and to my dismay, it was only a 7 day supply. It took a few calls to get through to the pharmacy and when I did, I questioned them about the script. Turns out, they simply filled the wrong on and going forward, they will try to fill for the 14 day supply. This of course assumes that it…


There’s yet another snag in getting Gavin’s meds refilled and I’m seriously frustrated

Gavin had his blood work done first thing Monday morning. The lab has had almost four days to run them and fax the results to the pharmacy. They have yet to do so. Mind you, this is a stat order meaning it's a priority and should be completed the same morning. Unfortunately, getting the lab to fax the results has been an exercise in futility. This time however, it wouldn't have mattered anyway because the new script never came through correctly and had to be resent this afternoon. Hopefully, everything will be in order for a afternoon delivery today. At this point, I still don't know if the updated script will even be approved. Gavin's had six months of good numbers and that's makes him eligible for a 14 day…

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Gavin’s appointment went well

Gavin's psychiatric appointment went great this morning. Nothing changed and we're going to continue pushing ahead with his current dose of Clozapine, at 300mg/day. There is little evidence that increasing the dose will produce a more positive outcome. In fact, we have a ton of evidence to the contrary. Gavin may never be free from delusion or psychosis, and that's something we've accepted. Our mission is to find a dose that is both safe and maximizes his quality of life. I feel like 300mg/day is a good balance. We will just keep on keeping on.. 😀

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This is a f*cking nightmare every week

It's Sunday, and we still have not been able to get Gavin's Clozapine refill. He has his bloodwork done every Wednesday morning, but the pharmacy either doesn't check for the labs, or they aren't sent to them in the first place. We end up waiting and waiting for the refill to come in. I set everything up so that there's a few days of overlap, and we have a backup supply as well. Timing is of the essence with Clozapine because he can't ever miss more than two doses. Lizze called again today, and they should have it ready in the morning. We still have his backup supply, so he's not missed anything. That being said, it's incredibly frustrating. There's so much red tape surrounding Clozapine, and it's a nightmare…


Code Z

Another day, another psychotic episode. Last night, Gavin came running into the living room and was visibly upset. He began nervously pacing back and forth before blurting out code z. I wasn't paying close attention to what he was saying because he's psychotic and saying all kinds of crazy things. I don't mean that disrespectfully but instead it's literally what's happening in my house right now. After he began shouting code z - code z, I was concerned about his little brothers hearing him, so I calmed Gavin down and asked him to explain to me quietly what was going on. Even paying meticulous attention to his words left me struggling to follow what the hell he was talking about but here's what I gathered. Code Z stands for Code…