Immunocompromised Archives

Update on Gavin’s fever

I know I promised this yesterday but life has been absolutely crazy. I'm having to swim a bit harder to keep my head above water. So, I apologize for the delay. I shared the other night that Gavin was running a low grade fever, at least what a low grade fever is for him. He's not showing any other symptoms at all. His fever climbed a little bit that night and then dropped back down a little by morning. Later in the day, he was back up to 99.5°F, which again, is warm for him personally. I'm not sure what is going on but Lizze and I have been talking about it and it could just be one of those weird Gavin things. For the record, this photo is pre-covid.…

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December 2, 2020

My thoughts

This week just became more stressful

This week has gotten insanely crazy. The last 2 days have been incredibly stressful but not for any reason you'd ever suspect. I was letting the dog out last night and I found a subpoena taped to my font door. I have been subpoenaed to be a State's witness in a very serious trial. I was completely caught off guard and I was required to be in the courthouse in standby for at least a week waiting to testify. This took place shortly before Lizze left last year and I think I talked about it then. Anyway, I'm not directly involved at all. Trying to mix things up a bit with the remote learning Basically, this in regards to piece of evidence. Lizze and I spent a great deal of…

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September 11, 2020

Gavin / My thoughts

Gavin’s labs came back and it’s mostly good news

Let me start out by stating that I'm absolutely overwhelmed. The last few weeks have been incredibly challenging for me. The last 2 weeks in particular, have been much worse because I've been so worried about Gavin's health. I have an update for you but not really an explanation because I don't know that we really have one at this time. After an enormous amount of frustration, glitches with MyChart, and long phone conversations with the always amazing people at Akron Children's Hospital, I was finally able to get the results from his recent labs. Gavin spent his hurry up and wait time working in his 5D art stuff. ☺ The headache it took to make that happen is due in part to unusual circumstances, HIPPA and technical problems. That…

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September 3, 2020

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…

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September 2, 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…

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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…

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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…

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August 27, 2020