Love, not the romantic kind that one typically associates with Valentines Day more like the kind of love you have for your child when they are sick and worrying you so, is in the air at our house. It is our littlest cupid, the one with the red hair and beautiful blues eyes, that is weighing heavy on our hearts. Lucy is sick, she has been acting “off” since Thursday. By Saturday night she was hot, irritable, and just plain miserable! Her pulse-ox and heart rate monitor kept alarming all Saturday night. At first when I heard the alarm I thought the probe had fallen off of her foot since it just kept alarming and wouldn’t stop. I was very surprised to see that it was alarming for accelerated heart rate. Normally, she de-sats and the monitor alarms for a minute or two because she has aspirated her saliva, and then it stops alarming when she has cleared her airway. She is experiencing very high fevers of 104 plus degrees, which is most likely the reason for her accelerated heart rate. One of our concerns for her is how long can she endure this before it just wipes her out? Kids with mitochondrial disease are energy deficient, her body just doesn’t have any extra energy to spare.
We watched and waited all day for any signs of improvement in her, and after seeing none I finally called our pediatrician after dinner last night. I waited to call her until after we ate our “Valentiney” dinner knowing that an hour was probably not going to make a huge difference in ER wait time, and also I didn’t want to disappoint our other kids. There’s something special about eating food shaped like hearts on Valentines Day that you just can’t pass up. I knew that she was going to tell me that we needed to take Lucy to the ER to try figure out what’s going on with her. This is just how we have to treat all illness with Lucy. Unlike most children, any illness for Lucy can be detrimental. Lucy and I both took a long afternoon nap yesterday since we had been up most of the night before, I was oh so grateful to my husband for allowing me to do this since we ended up spending most of last night in the ER at DuPont. I just feel bad for him that he didn’t get to take nap because he too was up all last night.
Lucy’s CBC, electrolyte panel, nasal swabs for the flu and RSV, came back normal; No indication of infection. However, her chest x-ray at first glance looked normal, but the final report is indicating signs of possible viral infection. We left the ER at 3:00am feeling somewhat better, but still with a very sick child. This is the first time that we left in the middle of the night with her, normally we get admitted. I was happy to be coming home, but still so very worried. She continues to be running high fevers. We have been giving her Motrin around the clock and it seems to help for a little while, but her fevers are getting higher. Her heart rate comes down slightly when her fevers are lower but creeps back up after a few hours.
We are watching and monitoring her very closely. We just hope and pray that her body can fight off whatever it is that is ailing her, and that she returns back to the Lucy we all know and love. Thanks for all you thoughts and prayers, we’ll keep you posted.