Read more about the article Why I’m worried about Gavin today
Gavin / IVIG Infusion / My thoughts / Schizophrenia

Why I’m worried about Gavin today

It started out like a typical Monday morning. It wasn't anything amazingly awesome, or horrifically terrible. The boys were tough to get moving but we got to school on time.  After dropping the boys off at school, I told Gavin to get his infusion supplies together. Every Monday and Friday morning, Gavin receives his IVIG infusion to treat his severely compromised immune system.  Typically, Gavin's very anxious to get this done because he he feels better once it's done.  Today however, Gavin essentially refused his IVIG infusion because he had a mission to go on, and he didn't want to go into battle with needles in his stomach. I can understand that, but he's never done that before.  I haven't yet learned the details of this particular mission or how…

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May 22, 2017
Read more about the article This was a big step forward
Common Variable Immunodeficiency / Gavin / IVIG Infusion / My thoughts

This was a big step forward

Gavin had his IVIG infusion this morning/afternoon. Everything finished up fine, but it took a really long time. What was different about this particular infusion was that Gavin wanted to hangout in his room during the procedure.  This is highly unusual because when he's undergoing this procedure, he hates to physically move. He's afraid that the needles will move.  This morning however, he said he wanted to move upstairs and watch a movie on his tablet.  We were happy to hear this because he needs to be able to walk around while receiving his IVIG. He doesn't have to move around, but it's a good thing that he's able to get up, and move around without being afraid.  This was a big step forward. ☺ 

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May 15, 2017
Read more about the article Why I withheld my son’s IVIG infusion this week  
Gavin / IVIG Infusion

Why I withheld my son’s IVIG infusion this week  

I'm pretty sure I told you that Gavin's IVIG supplies were delivered on Wednesday. What I didn't explain was that we held off on giving it to him until Friday.  The reason behind that seemingly counterintuitive move was simple. By the time we could have given him his infusion on Wednesday, it would have been really late in the day. With his next scheduled infusion being essentially twenty four hours away, it was too close together.  If we had gone ahead with a Wednesday infusion, we would have had to push off the Friday infusion, thus fucking up the entire schedule as we worked to get things back on track.  By holding off and waiting until Friday, we were able to preserve the schedule and keep things from getting worse…

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February 26, 2017
Read more about the article Major Update on Gavin’s missing medications
Common Variable Immunodeficiency / Gavin / General Update / Immunology / IVIG Infusion

Major Update on Gavin’s missing medications

Throughout the day, I had about half a dozen different conversations in regards to Gavin not receiving his IVIG medications and supplies. I spoke with his doctor, his insurance case manager and the head pharmacist at the pharmacy we want to switch to for his supplies.  Let's get this out of the way first.  Gavin's doctor's office was finally able to get things straightened out with our current supplier. The supplier appears to be who dropped the ball on this one.  Setting aside blame and focusing on what matters most at this very moment. I can share that Gavin's medications have been reordered. They should be arriving on Wednesday.  How am I going to prevent this from happening again?  The simple solution to fix this is going to be complicated…

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February 21, 2017
Read more about the article 1 big problem we had with Gavin’s IVIG infusion today
1 big problem we had with Gavin’s IVIG infusion today
Gavin / IVIG Infusion / My thoughts

1 big problem we had with Gavin’s IVIG infusion today

I mentioned in an earlier post that Gavin has some problems with his IVIG infusion this morning. It was actually more of a problem during his infusion and not really with the infusion itself.  Normally, he sits in the same place on the same couch and plays the same game on the Xbox or his tablet, to help pass the time.   Today however, his bladder issues hit him really hard. He was unable to sit down without having to get up and race to the bathroom.  It got so bad that we had him stay in his bedroom for the duration because his room is right across from the bathroom and he wouldn't have to keep taking the steps.  That threw him off because he's very particular about the…

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January 23, 2017
Read more about the article When IVIG Infusions go wrong
Gavin / IVIG Infusion

When IVIG Infusions go wrong

Gavin's IVIG infusion has been a disaster so far. First of all, the supply company shorted us the needles needed to draw up his meds. I had to find a pharmacy that carried theses and was willing to sell me some without a script. Honestly, who would be buying these things without some a script? I guess I get it. Luckily, the Walgreen's down the street was willing to because they are familiar with Gavin and his infusion needs. Unfortunately, after I arrived home and struggled for about 20 minutes to draw up his medication, I realized that they sold me fricking filtered needles. Let me just say that trying to draw up his meds with these needles was like trying to suck a watermelon through a stir straw. Thankfully, I was…

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January 13, 2017
Read more about the article It wouldn’t be a Monday without this… 
Gavin / IVIG Infusion

It wouldn’t be a Monday without this… 

It's another Monday morning and aside from Emmett being home sick, it's been a pretty good start to the week.   Unfortunately for some, Monday's really suck. Gavin is one such example. Every single Monday, he must undergo a process called an IVIG infusion.  He's the proud owner of a severely compromised immune system and he needs to receive donor antibodies every Monday and Friday.  It's not a super invasive process but it is painful, comes with side effects and will have to be done for the rest of his life.   I'm super thankful that he is receiving these treatments but I really hate to be the one causing him pain by sticking the needles in his belly.   He's doing really well with his infusion this morning. I…

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November 14, 2016