When you’re a parent you’re bound to have those days when it seems like nothing is going right. When you’re a parent of a child with cystic fibrosis, those days probably come a little (maybe a lot) more often.
At least with our 15-month-old daughter Anna, when she’s sick, things seem to go from bad to worse to total meltdown in the span of a few hours. There are some things that are just hard to see the good in, but one small good thing is that it has made me VERY in tune with her symptoms.
I know long before anyone else when something is going on with her, from her temperature to the sound of her breath. When no one else can hear or feel a difference, I can. The bad thing is that there isn’t always something I can do about it. Usually we get her on antibiotics right away, which has helped us be able to care for her at home, but there is so much more that goes along with it…
This is what I call the CF snowball. First comes the anxiety. You can tell something is wrong, but you don’t know what or where it will go yet. Usually this is when we place a call to the doctor, and soon after we start antibiotics because our doctors prefer to be cautious.
The antibiotics don’t prevent the sickness because it’s usually a virus we’re dealing with, but it prevents things from getting really bad in her lungs. After the fever/runny nose/small cough, it’s rare that things don’t at least escalate a little bit in the lungs.
At least with Anna (and this may be different in our case because she has had respiratory syncytial virus) she starts to get wheezy. This means extra nebulizer treatments and increased manual physical therapy. So now we’re at extra meds, more breathing treatments, and more time spent doing physical therapy.
Next comes the sleep deprivation. Whenever Anna is sick, she has trouble sleeping. She doesn’t feel good, and the antibiotics cause other problems like diarrhea and diaper rash. As a parent you’re already struggling through extra physical therapy and breathing treatments (she isn’t the MOST cooperative as it is, let alone extras!), which means a lot more time holding a crying, squirmy baby and not getting anything done around your house.
You’re also carrying around this extra stress and anxiety because until she starts getting better, there is no saying how bad it will get. It’s already exhausting, and then you hardly get any sleep.
Next comes the guilt. Guilt has become a common emotion for me, especially during the sick days. I get these moments when I realize I’m getting frustrated, and I feel like the lowest of low for even thinking of myself when my baby is the one who is going through the belly pain and the labored breathing and feeling sick.
I wish more than anything that it could be me, but I’m confident that will be something I struggle with forever and something that all parents who see their child hurting in any way struggle with.
Eventually we get to a point where things start to turn around. We’re getting to that point today, which is day nine of this most-recent semi-sickness. I wouldn’t have thought this one was too bad or even snowball material until day four, when she got a rash covering her entire body.
Anna had an allergic reaction to her antibiotics, and if that’s not “WHAT ELSE COULD POSSIBLY GO WRONG?!?!?!?” material then I don’t know what is. After having been on it at least four times before, she has suddenly developed an allergy to Bactrim. This is most upsetting because it has worked so well for her in the past, she doesn’t mind the taste, and it is one of the best for treating the common bacteria that her cultures have grown in the past, which is staph.
Her doctors don’t seem overly concerned, but they are going to send her for a scratch test to confirm it, and they said they’ll revisit it the next time they need to prescribe for her. For now she switched to Augmentin, her rash cleared up, and it seems like we’re finally on our way out of this one.
The point of this post isn’t to show all the things that go wrong when our CF kids get sick, but to just say if/when it happens to you and your child (CF or not), just know that you’re not alone.
There are moms everywhere thinking, “What else could possibly go wrong?!?!??” at this very moment. Hang in there! There are better days to come. And yes, I’m talking to myself.
This was reprinted with permission from the blog Sister Fibrosis: Our Family’s Journey With Cystic Fibrosis.
Do you have advice or encouragement to share for parents of sick children? Let us know in the comments.
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Kate Becket writes the blog Sister Fibrosis: Our Family’s Journey With Cystic Fibrosis and is involved in fundraising for the Cystic Fibrosis Foundation. She is a graduate of Penn State University.