Respiratory Syncytial Virus

RSV! One of the most dreaded respiratory viruses that our SMA children can have! Kaitlyn has just been diagnosed with RSV! We did EVERYTHING in our power to prevent this from happening. We are diligent hand washers, Owen has to remove all clothing at the front door when he comes home from school, we are careful when out in public to teach our children not to touch things (elevator buttons and such), etc. etc. etc. RSV is nasty. It's super contagious and is not like the typical cold virus where once you have a particular virus you can't catch it again. RSV can be contracted over and over and over again. That's what makes it particularly nasty in my books!!!

We brought Kaitlyn to hospital over issues with digestion. We have only been able to get half of her normal feeds into her for four days now. We thought that if we brought her in that she could be looked at and we could figure out how to get more feeds into her, even if it meant TPN for a few days so that she wouldn't be compromised nutritionally. They of course had NO idea what to do with her!! It's kind of funny watching medical professionals stumped, kind of scary too! They decided to have radiographs done of her abdomen, particularly the placement of her G-tube and a look at the bowel. The x-rays have shown a partial blockage of the bowel, which is why she isn't tolerating full feeds. We are currently giving her a bland mix of her regular formula and pedialyte to see if she digests it any better. It did seem to be working, but Tim thought tonight that she was reverting a bit. I think perhaps she was just too tired. Time will tell.

Back to the RSV. So far, because they tested for RSV very early in her "cold" (as we hadn't brought her to hospital for her cold symptoms) she is managing very well. She has had a few dips into the low nineties, but overall doing fairly well. But this is only day four since the onset of ANY symptoms! Typically days 5-7 are the worst, this is when the virus seems to peak. A couple of doctors today were even saying that it could be as much as ten days before we see a real spike in symptoms! We are in for a long haul regardless! This is not something that any SMA child is going to shake off in record time. Kaitlyn is the second child that I personally know of that has both received the RSV vaccination and still gotten RSV! Not too sure what's going to happen next year! She'll probably be denied the shots since she got the virus anyway.

As always (but especially now), keep our little one in your thoughts! We are trying to be optimistic that since we caught it so early that we can stay on top of things. Kaitlyn is on Q3 treatments and we are doing our best to keep those airways open!!