With all the recent talk surrounding Gavin's immunological issues, I thought I would put something together that would help to educate those among us who may not know what CVID is or what it means to be diagnosed with it. Here's a quick 5-minute rundown or what Common Variable Immunodeficiency is and who it impacts Gavin. https://youtu.be/VvuuWe-8QR4
We've been so stressed out since learning about the GAMMAGARD shortage. GAMMAGARD is the medication used to treat Common Variable Immunodeficiency, of which Gavin has. Basically, GAMMAGARD is donor antibodies from thousands of people and is used to replace Gavin's broken immune system. There is a nationwide shortage of GAMMAGARD and that presents huge problems for Gavin. Without treatment, Gavin doesn't have a functioning immune system and for those wondering, that's not a good thing. We had our emergency appointment with his immunologist this morning and everything went smoothly. Without going into great detail because I'm just not in the mood to do so, I'll sum things up. The manufacturer of GAMMAGARD says its on back order. From what we've heard, it sounds as though this is a manufactured shortage…
It was a rough night and a challenging morning. It's a big day and it's made worse by my lack of sleep. That being said, we've made it to our appointment with Gavin's immunologist. We actually made it about 20 minutes early as well. Traffic was much kinder to us than I had anticipated. Now we have some very, very difficult decisions to make about the future of Gavin's health.
As the day has gone on, Gavin's sounding worse and worse. That doesn't mean there's anything to worry about but I worry nonetheless. He's most likely dealing with the same cold that Elliott and Emmett keep giving back and for to each other. Logically, I don't think that there is anything to lose sleep over but at the same time, we can't afford to be complacent either. Monday he sees his immunologist anyway and if she's concerned, we'll deal with it. He's probably going to need bloodwork done so we held off on Gavin's labs for this past week and figured we could double dip when she gives us a new order. There isn't a great deal that we can do to help Gavin but if we can limit his…
I have been sharing how stressed out and worried I am over Gavin's current immunological crisis. I consider it a crisis because there is a nationwide shortage of GAMMAGARD. This medication literally replaces his broken immune system and keeps him from getting sick or worse. Until we resolve the issue and solidify a working plan for moving forward, I consider this a potential life threat and therefore a crisis. The only thing that could make this particular situation worse is if Gavin were currently sick. Unfortunately, that has come to pass because Gavin is currently sick with whatever Emmett and Elliott have been fighting off. We're probably looking at a simple cold but when your child has a severely compromised immune system, only one dose of GAMMAGARD left and no…
I wrote about frustrations and explanations for why guardianship hasn't been completed for Gavin. I was explaining how things keep coming up that force us to reprioritize everything. See: I'm going to need an attorney. Not twenty-four hours go by and we're slammed once again, with yet another potentially life threatening issue. I received two very early morning phone calls today. One of from the pharmacy responsible for managing Gavin's IVIG infusion supplies and the other was from his immunologist. Turns out that there is an ongoing, nationwide shortage of GAMMAGARD, the life-saving medication that consists of donated antibodies from thousands of people, used to provide Gavin with a temporary, functional immune system. Gavin has something called Common Variable Immunodeficiency, see What the Hell is Common Variable Immunodeficiency. In laymens…
Eariler today there was a knock at the door. It was Akron Children's Hospital delivering Gavin's IVIG infusion supplies. I guess I didn't realize it was already that time of month again. Gavin has been getting these delivers for more years that I care to remember and as much as I hate the fact that they're necessary, they are. These supplies allow for his twice a weeky IVIG infusions. Without these infusions, Gavin wouldn't have a functional immune system. It's a heartbreaking reality that people like Gavin and families like ours have to live with. There's no cure for Common Variable Immunodeficiency and while the treatment is available, it's also incredibly expensive. Over time, it's likely that Gavin's condition will continue to worsen and he will need higher and higher…
Gavin's IVIG infusion is not going well this morning. For some reason, we can't get any flow and I'm having to force the solution through the tubing manually. It works but it's very difficult and quite painful for a Gavin. I don't know what's wrong for sure, but it could be scar tissue. All I can do is continue to force it through or re-stick the needles in his belly. Gavin wants to avoid being re-stuck and I don't blame him. Hopefully, this will finish up sometime this afternoon and he will be okay. I'm just going to keep an eye on him through the Ping camera from Vivint Home. I've found so many uses for this system but the best have involved using the cameras to monitor my kids…