Sometimes life in the Barrus house is like one of those really bad late-night infomercials where you just get comfortable with the thought/experience/moment and suddenly life busts in and announces, “But wait…there’s more”! Maybe this is why I don’t like roller coasters? Or infomercials? Most of the time I do a pretty good job of juggling the endless needs of large family life. You know….laundry, food, homework help, taxi? You get the idea. But lately the infomercial folks have kicked it up a notch and added a few extra bonuses.
In August, Bauer caught some sort of viral illness. I suspect Roseola but never had it confirmed by a doctor because he handled things fine and quite honestly, Bauer is known to get a zillion viruses that typically run their course and we move on. Last year he missed two full weeks of school with viral pink eye and a rash. He’s been on crutches more times than I can count because he’ll catch a cold and then won’t walk for a week because it settles in his hips. His eyes hurt, too. Fortunately, we have a fantastic rheumatologist that follows him (and his brothers) so we are well supported.
This virus lingered a little longer and he was ragged (and no…it wasn’t COVID. He was tested for that one.) I chopped it up to homeschool starting, Optimist football, and being a growing boy, but I was also making a mental note of the dark circles under his eyes, the fatigue, and complaints of aches and pains that seemed ever present. We had our six month appointment with Dr. Knibbe and he ordered routine labs. What I wasn’t expecting was that they showed Bauer’s immune system wasn’t working as well as it should but not bad enough to cause alarm…yet. (Remember how infomercials do this?!)
Last week, someone else commented about how terrible Bauer looked. I thought, “geeze, thanks. I think.” The friend meant well and I didn’t think ill of her (so you shouldn’t either…just sayin’). He was still complaining of pain, sleeping longer than his usual, and he just had a dullness to him. So I emailed the doc and asked him to repeat the labs we had run in August just to reassure myself that all was well.
“But wait….there’s more!” Turns out, my gut was right and so was my friend. Bauer isn’t well. His immune system isn’t working too great. Yup. We’ve got a kid with a bad immune system…in the middle of a pandemic! Bauer has an IGG deficiency which in laymen’s terms means that his body isn’t producing enough antibodies (think soldiers) to fight off infection. According to the University of Rochester Medical Center, “When your body feels it is under attack, it makes special proteins called immunoglobulins, or antibodies. These antibodies are made by the plasma cells. They are let loose throughout the body to help kill bacteria, viruses, and other germs. There are several types and subtypes of immunoglobulins. IgG is ready to multiply and attack when foreign substances get into the body. When you don’t have enough IgG or they are not working properly, you are more likely to get infections.” He essentially doesn’t have the army necessary to fight foreign invaders.
Fortunately, there are treatments that can help. Starting next week, Bauer will start monthly IVIG treatments which is essentially a 3-4 hour IV infusion of clean immunoglobulins (thank you plasma donors!) that will hopefully boost his COVID (and flu and everything else) defense system. We have some tough decisions to make about how to continue to keep him safe in a pandemic world during cold and flu season when you have 18,000 other kids living life in your house, too. When I asked our doctor if we needed to take extra precautions his response was epic, “Can’t imagine more precautions than you are doing already unless there’s a bubble handy! Mask, social distance, online school, no going to events with more than family present, etc.”. Anyone got a bubble? Bauer’s taking it all in stride which is typical of his sweet spirit. His biggest concern was if the doctor’s office would have Wi-Fi so he could maybe play a video game on the tablet while he got his infusions. In the meantime, I’m wondering where my free shipping is. 😀
Yes, this stinks. It initially felt like just another hard thing to deal with in a pile of hard things. It took me a few days to get my feet under me, find some humor, and exercise my faith. I have squared my shoulders, adjusted my armor, and now I’m ready to work. So, bring it on infomercial peeps because there is more to Bauer and I (and the rest of the Barrus crew) ready to tackle what’s next!