We’re starting 2 new medications with hopes that they’ll help

We had an eventful day and I'm fucking exhausted. The boys had their appointments this afternoon at Akron Children's Hospital. The appointments went pretty well. Right now, we're trying to deal with the excessive anxiety and sleep disruption both the boys are experiencing since their mom left earlier this summer. It's very difficult to tease apart ADHD and anxiety because they can present similarly. There hasn't been any major changes anything at this point. We did add a new medication to help with sleep for Elliott and nightmares for Emmett. Elliott is starting Clonidine and Emmett is starting something similar but I can't remember the name. Emmett began his new meds tonight but Elliott will have to wait until tomorrow cause his script hasn't arrived yet. We're hoping that we…

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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…

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We’re missing a critical delivery

Alright, so we have another little problem. With all the craziness going on in regards to Gavin's detachment from reality, we overlooked that Gavin's IVIG infusion supplies haven't arrived yet. This is not a huge deal at this point, but we've been having issues with nationwide shortages of his IVIG medications recently. We've had to switch meds a few times in the last year, and that's not a good thing. There was a temporary issue with his previous delivery being delayed a week, but the supply was replenished, and his delivery received. I'm waiting to hear back from the supplier. Usually, we get his supplies the week he runs out, so it's not unheard of for them to arrive on the actual day his infusion is due to happen. It's…

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The hallucinations may be getting worse

Gavin's becoming more and more involved in his imaginary worlds. I don't know if he's having more hallucinations or if he's more vocal about them. We don't know what's what right now. He's officially off the Clozapine, and the half-life is pretty short, so it's moving its way out of his system. While this potential increase in schizophrenic symptoms is concerning, it's more annoying than anything else. I say annoying because he's talking about it a lot and that gets old. His hallucinations aren't getting darker or more violent, and that's a good thing. He wants to fill Dr. Pattie in on all his adventures at therapy tonight, and I think that's a great idea. Once the dust settles, we'll have a better idea about adding a different antipsychotic, but…

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Major medication changes and the impact they have on my family

I've got a laundry list of medication related updates for you all tonight. We're going to briefly talk about myself, Lizze and Gavin because we've all had very recent changes to medication. Me It makes sense to begin with me, as I'm pretty straightforward. As I mentioned just prior to my oral surgery a little over a week ago, I've decided that I need more help with my depression than I'm currently getting. This help comes in the form of additional medication. I'm not super excited about starting a new medication but I refuse to allow depression to control my life and influence my ability to be a good husband/father. Just so we're clear, I'm not saying that if you're depressed, you can't be a good parent, spouse or partner…

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There’s way too much shit to worry about as a special needs parent

I've been playing a very frustrating game of phone tag with the pharmacy this afternoon. I need to make sure they either look out for a fax from the lab or call and have it faxed over because Gavin needs his refill tomorrow. I cannot stress enough that Clozapine is the most tightly controlled medication in the United States for a reason. You do not fuck with this medication and it has to be taken seriously. The fucking stress that we experience simply because of this goddamn medication is inexplicable. I also reached out to his doctor and asked that they immediately email with the results of his his labs because I'd like to sleep tonight. They do that anyway but I feel better reminding them. They know how serious…

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The other shoe just dropped

Anytime we get even a tiny bit of good news, deep down inside, we're waiting for the other shoe to drop. There were three things that I needed to go well today. One was Gavin's lab work, another was Ruby's appointment and finally resolving whatever is causing problems with his Clozapine prescription. I'm not sure what to think about Gavin's labs (see Why good news doesn't always make me feel better), but Ruby's appointment went well (see The first solid piece of good news this week). The last thing has to do with Gavin's meds and that brings me to the other shoe that just dropped. There was a delivery of medications this afternoon and dispite being promised they would fill it, the pharmacy still didn't have Gavin's prescription ready.…

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Why is this so fucking complicated?

The goddamn pharmacy didn't get Gavin's Clozapine filled in time for the second week in a row. This is very time sensitive and it's in a set schedule. Gavin gets his bloodwork done on Monday or Tuesday and they pull the labs Tuesday afternoon. The script gets filled and delivered by Wednesday afternoon. It's really not that complicated because it's the same thing each week. I made several phone calls at the beginning of the week to ensure everything was in order. I even called late Tuesday afternoon to remind them to call for the labs and make sure the script was either ready for pickup or delivered by Wednesday afternoon. I was assured this wouldn't be a problem. Thankfully, we have an emergency supply to cover for disruptions like…

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