Read more about the article Longer needles are needed
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

Longer needles are needed

Gavin will be resuming his IVIG infusions this morning. He missed his infusion on Friday cause his supplies didn't arrive until late and then he ended up in the hospital. We opted to hold off until today because he was in bad shape and when he was getting back on his feet, we didn't want to put the extra stress on his body. Missing one infusion isn't a huge deal. It's not something we want to do for shits and giggles, but considering the circumstances, it was for the best. I have to call Akron Children's Hospital today because we need to order longer subcutaneous needles for his infusions. His doctor wants to try one size longer to help address the issue of his infusion leaking, requiring frequent resticks. Gavin's…

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April 15, 2019
Read more about the article The weekend sucked, but I’m feeling pretty good
My thoughts

The weekend sucked, but I’m feeling pretty good

After a long, physically and emotionally draining weekend, I'm feeling like we ended up being very lucky. Gavin's emergency was dire and very scary. It's impossible to explain what it felt like in those moments leading up to calling 911. Both Elliott and Emmett were affected by the experience. You can't see the things they saw and not be impacted by it. Elliott seems to be doing okay. Although truthfully, he internalizes everything and it may be a bit before we know how much he was impacted. Emmett was most visibly upset. He was distraught seeing Gavin in the condition he was in. He was afraid Gavin was going to die. Poor Emmett was curled up in the fetal position sobbing in the corner of his bed. It was so…

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April 15, 2019
Read more about the article I won’t be disappointed by a slower week
My thoughts

I won’t be disappointed by a slower week

I slept like a baby last night. The level of exhaustion I was experiencing was beyond words, and I'm so grateful for the excellent night's sleep. Lizze isn't fairing as well because of her body's reaction to extreme stress. It had been an incredibly stressful 24 hours, and she's now paying the price. Anyway, Elliott is getting sick with an upper respiratory thing, and I'm unsure of what he will be looking at for school this week. Emmett's super hyper and a bit emotionally overwhelmed by everything that transpired but is otherwise doing well. Gavin is doing well. He slept through the night and is doing well as he builds up the levels of clozapine in his system. Miss. Ruby has finally shed her cone of shame, and she couldn't…

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April 14, 2019
Read more about the article My Son was Rushed to the Hospital: An Important Update
Gavin / Major Update / My thoughts

My Son was Rushed to the Hospital: An Important Update

Alright folks, first of all, I want to thank everyone for all the thoughts and prayers over the last 24 hours. We were really scared and all truly appreciate it. Before I call it a night, I wanted to update everyone as too what happened. My brain is absolutely fried, and I'm exhausted from a long, emotional 24 hours, so I need to keep this short and sweet. We started Gavin back on Clozapine Friday night, after a discussion with his doctor. It was decided that Gavin had reached a point where we didn't have any choice. He was put back on 300mg, and we were told to give it to him at night because it will help him to sleep through the night. He'd only been off the Clozapine…

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April 14, 2019
Read more about the article Gavin’s in the hospital and here’s what happened
Gavin / My thoughts / Thoughts and Prayers

Gavin’s in the hospital and here’s what happened

As I'm writing this, I'm sitting on the floor at the hospital, because Gavin was rushed here by ambulance tonight. We aren't entirely sure what's going on. He's stable but in rough shape. We suspect it's a reaction to his meds. I had actually recorded a pod this morning and talked about what's going on with Gavin. It's easier to just listen than for me to try and explain everything. Since this pod was recorded, we had to start him back on the Clozapine, per his doctor. Gavin was not doing well, and Clozapine is the only medication he can take. We suspect he's having a reaction to going back on and it was pretty scary. It's still scary because he's not doing good. About midnight, Gavin collapsed in the…

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April 13, 2019
Read more about the article We’re missing a critical delivery
Gavin / IVIG Infusion / Medication Management / My thoughts

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
Read more about the article I’m determined to have a good day
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
Read more about the article We’re becoming more concerned
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