CVID Archives - The Autism Dad

The coolest thing happened today

As the title states, the coolest thing happened today. I've been talking about Gavin's ever-growing level of independence, and today marked a big first for him. Gavin gets his IVIG Infusion supplies delivered every month. He organizes them into kits and even does the infusions on his own. I have almost zero involvement in the process anymore. He's doing incredibly well, and I'm proud of him. The only part of this process that he didn't do was sign for the delivery, fill out the paperwork, and mail it back to the hospital. That's always been my job. It's been my job until now, that is. When his delivery arrived yesterday, I asked him if he wanted to do the paperwork. He has to sign his name, date it, and stick…

3 Comments

January 8, 2022

My thoughts

Huge thank you to my friends at the Stark County Health Department and here’s why

It's been kind of a whirlwind day in The Autism Dad household. I had 2 interviews scheduled this afternoon and ended up having to reschedule one of them for a later date. I hate inconveniencing my guests but it was unavoidable. Eariler this week, I received the callback I had been waiting for in regards to Gavin's first dose of the COVID vaccine. He was scheduled for 3:40pm this afternoon. That sorta turned our day upside down because not only did it mean breaking quarantine, but we'd be going somewhere with a lot of other people. It was a calculated risk and one that we couldn't avoid. I was able to get my first interview done before shutting down and making sure Gavin was ready to go. He was so…

1 Comment

January 29, 2021

Gavin / My thoughts

This isn’t supposed to happen

It's Gavin's 21st birthday and we were off to a good start. His IVIG Infusion supplies showed up and he immediately went to work. Whenever he gets his supplies, I've taught him to put together kits containing everything he needs for each infusion. This serves a dual purpose. It helps him to learn how to organize, maintain and keep track of these life saving supplies. The other thing it does is help to streamline the infusion process as well as helps him to take inventory when the supplies are first received. It's important to take this inventory because sometimes items are missing and he needs to let me know immediately so I can get them ordered. This morning he put his kits together and he had enough supplies for eight…

2 Comments

January 18, 2021

Gavin / My thoughts

Some of Gavin’s labs are coming in and they’re still very concerning

It's been an emotionally exhausting day. I spent most of today trying to keep myself focused on the things I have control over. Unfortunately, there's a great deal that I have no control over and that sucks. I was very consumed with waiting on Gavin's lab results to come back from yesterday's repeat lab work. You can read the back story here. About 10 am this morning, part of the results came back and unfortunately, they haven't improved. I'm still waiting for the results containing his immunoglobulin levels because that's the big one. It stands to reason that we're likely looking at those results very concerning results being verified. As it stands, we are looking at another day before we get those results back and I can't explain just how…

1 Comment

September 2, 2020

Gavin / My thoughts

Quick Update On Gavin’s Condition

It's been a long stressful day but when is it not, right? I wanted to drop a quick update on Gavin's situation because I have some news. After a many phone calls and several attempted workarounds, Gavin's new lab orders were faxed to Akron Children's Hospital. By the time we got there, it was pushing 1pm. Gavin did great, as usual and we're currently waiting in the results. It's frustrating because I hate waiting, especially considering the stakes but hopefully, by the time you read this, we'll have some answers. Not much else to say at this point because today has been consumed with getting this addressed. I told you it would be quick.

0 Comments

August 31, 2020

Gavin / My thoughts

I’m really worried about his test results

We have a rather eventful week a head of us. The direction it takes will largely depend on the results of Gavin's labwork Monday. Background: If you recall, Gavin's labs from this past week were so concerning that we're retesting to make sure they're correct. So much is so drastically wrong that we need to rule out lab error. Gavin's not exeriencing any obvious problems and he's not complaining about anything. With how bad these labs were, he should be in pretty rough shape. Until we know for sure though, we aren't taking any chances and have locked down even tighter. End Background This will go one of two ways. Gavin's labs will either come back normal and we move forward or they will come back problematic and require immediate…

2 Comments

August 30, 2020

COVID19 / Gavin / My thoughts

I heard back from Gavin’s immunologist

I heard from Gavin's doctor this afternoon and I'm not surprised by the approach we're taking. Basically, Gavin's labs are messed up enough that we need to verify their accuracy. The plan is to redo his labs on Monday. The results will trickle in either that day or the following. If everything is fine, then we can breathe. If these come back the same, I'm not sure what we're going to do. If the results are confirmed, it would appear that there is something potentially very serious going on with Gavin. Until we figure out what is happening, I'm assuming the worst. Normally, I would not do that, or at least try not to do that. In this particular case, assuming the results are correct will require me to take…

6 Comments

August 29, 2020

Gavin / My thoughts

Please keep Gavin in your thoughts and prayers

I'm going to make this quick because my brain is completely fried and the rest of me is equally as exhausted. Gavin's labs came back today and some of the results appear to be very concerning. The reason I say appear to be concerning is because I'm not a doctor and I have only a basic understanding of how to read this. There are several areas that are concerning to me. Gavin's IgG level is 358 and the normal range is 578 to 1228. His IgM level is 20 and the normal range is 23 to 166. Gavin's IgA level is 24 and the normal range is 59 to 337. On the surface this looks bad, especially considering he had his IVIG infusion less than 24 hours before his labs…

1 Comment

August 27, 2020