Common Variable Immunodeficiency Archives - Page 96 of 260

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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April 12, 2019

My thoughts

I’m determined to have a good day

Gavin was up at an ungodly hour this morning once again. I'm going to give his doctor until I'm done walking to call me back. If I don't hear from them by then, I'm calling back. Squeaky wheel will be my middle name. The boys leave for school shortly, and I'll hit the track for about an hour or so. I'm going to try and record a pod today about managing crises because we're quickly approaching that with Gavin and it's important to talk about. We also have some Spring cleaning to continue working on, and I'd like to visit my grandmother. I'm determined to make this a good day and will make the best of whatever life sees fit to throw in my direction.

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April 12, 2019

Gavin / My thoughts / Schizophrenia

We’re becoming more concerned

This will be quick because I'm exhausted. I have a call into Gavin's psychiatrist because we learned that Gavin is waking up in the middle of the night to go on missions. This is very concerning because the last time we dealt with this, he was dealing with a voice he called his Lego boss. Lego boss was an asshole. He bossed Gavin around and would wake him up in the middle of the night to build Lego structures. He also tries to get him to do bad things. He's not real, but at the time, to Gavin he was. He hasn't said anything about his Lego boss returning, but something is waking him up in the middle of the night and making him do things. We need to turn…

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April 12, 2019

Gavin / My thoughts / Schizophrenia

Something is very very wrong

We had kind of a weird night last night. I was being interviewed on a podcast called, Daddy Unscripted and it went on for much longer than was initially planned. It was a fantastic conversation and one that I can't wait to share. By the time I was done, I wasn't up to writing, so I'm playing catch-up today. Elliott and Emmett are in the middle of State testing. Lots of fun. We're all existing in a house, full of stress and anxiety that State testing tends to bring my kids. I feel like they're handling things quite well and while Elliott struggled to fall asleep last night, both boys are doing great. They usually do very well on State testing, and there's no reason to expect anything different this…

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April 11, 2019

Gavin / Schizophrenia

Watching my son come unglued is awful

It's been a weird day, filled with Gavin related challenges. Lizze and I spoke at length this morning, and we both feel like Gavin is coming unglued. That's not meant in a derogatory way. We're both freaked out a little bit because there was serious doubt that the Clozapine was actually doing anything anymore and it's now quite clear that it was holding back the tidal wave of hallucinations. It's important to understand that as bad as things are getting for him in this area of his life, we do not see anything that warrants safety concerns for anyone around him. Announcing that he's a God is worrisome, but he's still a good guy, battling evil and not going dark if that makes sense. We would need to be more…

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April 10, 2019

Clozapine / Gavin / My thoughts / Schizophrenia

It’s heartbreaking and a bit scary

The boys had a great day at school today, and in the way home, we stopped to visit my grandmother. We had a short visit before returning home blah blah blah. Not to downplay the significance of the above paragraph but what I want to focus on tonight is what came out of therapy tonight. This is specifically in regards to Gavin. Gavin was pumped and ready to tell us all about the missions he's been on over the last couple of days. This shouldn't be anything new or shocking to you, especially if you're a long time reader. Gavin is Autistic and Schizophrenic among other things. As a result, he experiences things that only he can experience. In other words, he sees and hears things only he can see…

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April 9, 2019

Clozapine / Gavin / Medication Management / My thoughts

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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April 9, 2019

Allergy/Immunology / Elliott / Emmett John / My thoughts / University Hospital

We came we saw we struggled, but we survived

The appointments went pretty well. Everyone is doing okay, and Elliott was even able to avoid bloodwork. Emmett, on the other hand, was not so lucky. He needed bloodwork and ended up having to sit in line for over an hour to get it done. He was not happy about this, and I took the other kids out to the car, while Lizze waited for him to be called back. Once he was called back, he did great. It was just the anxiety created by the wait, that was causing him the most distress. We just arrived home, and he's doing much better. The rest of the day will likely be a mixed bag because he's most certainly overstimulated from this mornings events. I will not be surprised in the…

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April 8, 2019