Read more about the article My #specialneeds #immunocompromised son is terrified by #COVID19 and afraid of dying alone
COVID19 / Gavin / IVIG Infusion / Lockdown / My thoughts

My #specialneeds #immunocompromised son is terrified by #COVID19 and afraid of dying alone

I just spent a good chunk of time trying to convince Gavin that he does not have COVID19. This is heartbreaking and becoming an ongoing struggle that's proving difficult to navigate. In case you're one of my many new readers, here's a little background on Gavin so you can put this into perspective. Gavin is 20 years old but emotionally and cognitively, he's somewhere in the neighborhood of 5 or 6 years of age. That's the best guess as to where he is developmentally. Gavin also has many health issues that render his health fragile. While they all matter, the biggest concern in regards to COVID19 is that he's significantly immunocompromised. This means his immune system doesn't function properly and in order to stay healthy, he needs to infuse a…

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May 7, 2020
Read more about the article In other news
Gavin / IVIG Infusion / My thoughts

In other news

In other news, Gavin's IVIG Infusion went well. I'm still batting a thousand in the IVIG infusions that don't leak category. Gavin's happy and it also means less pain for him as well. His infusion went pretty quick today. It took less than an hour in total and that's always a good thing. Sometimes it can take four hours or more and that makes him very anxious. Today's infusion was a success and I think Gavin did a fantastic job.

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September 16, 2019
Read more about the article #Autism parenting is all about progress not perfection
Common Variable Immunodeficiency / Gavin / Immunology / IVIG Infusion / My thoughts

#Autism parenting is all about progress not perfection

It's not a huge surprise that Gavin's appointment with his immunologist went well. These appointments rarely go poorly because he's monitored so closely on a weekly basis. Gavin sees his immunologist because he has Common Variable Immunodeficiency or CVID, which put simply, means he lives with a severely compromised immune system. This is a life threatening condition that has no cure. In order to stay healthy, he requires IVIG infusions twice a week and we do those at home. Today's appointment is a follow up. We have to physically check in about every six months and have special labs run. That assumes there aren't any problems between appointment. Anyway, everything went pretty well and Gavin was even able to answer most of the questions on his own. I only spoke…

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August 7, 2019
Read more about the article His #IVIG infusion was a disaster this morning and here’s why
Autism Parenting Struggles / Gavin / IVIG Infusion / My thoughts

His #IVIG infusion was a disaster this morning and here’s why

Gavin's been having a difficult morning so far. It was IVIG infusion day again (as it is every Monday and Friday), and it did not go well. Lately, Gavin likes Lizze to place the needles in his belly because they don't often leak when she does it. Lizze and I are both concerned that Gavin isn't doing his own infusions anymore. It's imperative that he be able to perform these infusions on his own. Anyway, Lizze was going to help him as soon as she was done eating, but he either misunderstood or wasn't listening cause he went off and did it himself. Unfortunately, both needle placements failed and were leaking. That always pisses him off, and it's understandable. This means he has to be re-stuck, and that means more…

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July 19, 2019
Read more about the article Gavin had a massive, massive meltdown this morning
Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

Gavin had a massive, massive meltdown this morning

Gavin slept in this morning which is weird in and of itself. He didn't wake up until just before I got home from my morning walk. As I walked in the door, Gavin was working on getting his IVIG infusion ready, and it wasn't going well. It's been about an hour, and I just got Gavin calmed down enough to try working with him on his infusion. Gavin was so angry that frankly, he wasn't safe to be around. Angry is probably the wrong word. He wasn't angry at anyone. I think he was so frustrated with the infusions continuing to leak; he was beyond what he could cope with. I'm glad the kids weren't home because they would have been terrified by his behavior. Gavin was screaming as loud…

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April 15, 2019
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 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 Why is Gavin struggling with his #IVIG infusions lately?
IVIG Infusion / My thoughts

Why is Gavin struggling with his #IVIG infusions lately?

It was a rough morning in the sense that everyone was dragging. Emmett had a rough time falling asleep last night because he's got a stuffy nose and while that's unpleasant for anyone, it's especially troubling for someone with sensory processing disorder. Lizze got lunches made and I got the boys to school before hitting the track. Gavin put his infusion together and eventually got it going. He's struggling with these lately. When it comes to sticking the needles in his belly, he's become very, very hesitant. It's completely understandable and I don't blame him. The issue is that it's taking so long that he's risking contaminating the needles prior to sticking himself with them. I had to stick him last time but he did mange to get this done…

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February 25, 2019