A Little Hiccup
So…I almost hate to post this so soon after the amazing day we had yesterday, and all the good news we’ve had over the last few weeks, but Ana has a fever. She woke up extremely tired, which we assumed was due to the long, stressful day she had yesterday. She did go to school, but tonight she was lying in bed feeling extra tired way before bed time and was also getting chills, so she took her temperature and it was 100.5.
She freaked out a little. I tried not to freak out (but did…inside my head). I called Columbia’s service and Maria (the physician’s assistant who works with Dr. Martinez) was on call. She got back to me quickly and said to keep watching her and call back if the fever goes above 101.2 or so. I’d already given her Tylenol at this point, so hopefully it will be lower in the morning. Maria thinks it’s probably viral (I’m not feeling well either and have similar symptoms – fatigue, a low grade fever of about 99). Ana’s immune system is already compromised and her big day yesterday likely left her exhausted.
This is the first time that Ana has had a fever since the transplant. Aside from the immediate complications she had after discharge (the fluid in her abdomen and her elevated liver enzymes), we’ve been very, very lucky. She was understandably very upset. She was afraid she’d have to go to the hospital – it just brought up a lot of stuff.
I didn’t try to dismiss her fears. I’m scared too. But I did have a long talk with her because I don’t want her to feel terrified every time she gets sick. She was blaming herself too. She thought it was her fault for not using hand sanitizer often enough. I told her that there was no way she could avoid germs completely. It’s like blaming yourself for getting wet in the rain because you didn’t run fast enough through the drops.
Maria had told me in the past that Ana would inevitably get sick and she very well may have a rejection episode. Both are treatable. But even though we know she is at risk for infection and rejection (and will likely experience both of these things over the next year), it doesn’t make it any easier to deal with when it ultimately happens. It’s scary, plus it’s a reminder that life will never quite be the same. I told Ana that we’re in very good hands with the team at Columbia, and that I truly believe it will be okay. She said she doesn’t want to be sick anymore and I said, “Well, you’re not sick. This now a chronic condition that has to be managed.” It turned into a teachable moment. I told Ana that we’re not really sure what to do when she has a fever, or when to go to the hospital versus just waiting a day or so, but that we’d learn and we’d get good at it.
So the plan is to see how Ana’s doing in the morning and possibly get labs drawn if her fever is higher or hasn’t gone away. She also needs to drink lots of fluid – just like any other kid with the flu. I think I need some rest too! I’ll post an update at some point tomorrow. Hopefully this is just a little hiccup and nothing more.