On Monday night, Jax woke up in the middle of the night. This is not unusual – for the past 2 weeks, Jax has been waking up 5 – 6 times a night. (Yeah, I’m not a fan either.) But this was different; this was not his usual “I’m awake, come be with me” cry – this was a full-blown “something is wrong” cry.
I ran into his room and found him soaked in sweat and burning up with fever.
Jax has not had a fever since he came home from the hospital. (Seriously, he’s just like me – we run cool and don’t get high fevers, even when we’re really sick.)
It was scary! But we got the fever down with Tylenol and cold washcloths.
I brought him to the pediatrician’s office first thing in the morning. While we were there he started getting this strange rash. It was everywhere – his face, legs, back, diaper area – everywhere – all within about 10 minutes! The doctor watched the rash spread and immediately ordered a blood draw to check for infection. He said he had never seen a rash like it before.
Jax was diagnosed with Scalded Skin Rash. It was like he had a terrible sunburn all over his body. His skin hurt everywhere! And it literally came out of nowhere. I’m so glad we were at the doctor’s office when it happened!
We were lucky, though, because it can get way, way worse. (If you have a weak stomach, I don’t recommend Googling images of this.) Many times, kids are hospitalized with this rash because the burns are so bad!
Basically, the rash is a reaction to a staph infection. The doctor suspects the infection originated from the scrapes on Jax’s knees. Jax’s knees have been scrapped up all summer long. As soon as they start to heal, he falls and they open up again. We’ve been diligent about keeping them clean and using antibacterial ointment to prevent infection. Doctor said it was not our fault (he must have seen my lip tremble when I asked what more we could have done to prevent it)! He said sometimes things like this just happen.
Luckily, we were able to start antibiotics right away and he’s feeling much better. But for two days, Jax had a high fever and was generally miserable. Poor kiddo!
I was really worried that he wouldn’t be able to do the sedated MRI on Monday because he was so sick. But, we had a follow-up appointment last night, and everything seems to be ok. Cutting it close, kid!
He is cleared for the MRI, so we will be up bright and early on Monday morning. We will leave for Gillette Children’s Hospital in St Paul at 6:00 am. The actual procedure starts at 8:00 and will take about an hour.
They are doing a scan of Jax’s brain to check for a type of brain injury called Periventricular Leukomalacia (PVL).
This sounds scarier than it needs to be. There are many preemies out there, like JAM and Owen, who are thriving with PVL. (The link to Owen’s story provides a really good explanation of PVL.)
My hope is that his doctor is just erring on the side of caution and this will all be over soon. I’m trying not to think about it too much yet. There’s no point in worrying until we know for sure.
Jax is doing great. If he has it, it won’t change how much we love his hilarious belly laughs and his goofy voices. It won’t change how grateful we are for his life. It won’t change anything, really. It will just be another diagnosis in his medical records.
And we’ll just roll with it.
If you feel like sending some positive thoughts our way on Monday, we’d take them!
9 thoughts on “Taking It To the Limit: A Strange Skin Rash Just In Time for a Brain MRI”
Thinking of you!!! And thanks for the link to ain’tnorollercoaster. I think I’ll add that to my post (where I say, “don’t look it up” — because for those, like you, who WANT to know all of what it can mean, my post isn’t very helpful. 🙂
Do it! 🙂 Her post is really great and gives difficult information in an easy-to-understand way.
Positive thoughts and prayers for Jax!! Thank you for being so open and honest!
How scary! So glad he’s okay! A kid at the daycare I worked at once had this weird rash that looked like giant purple bruises all over his body, his face, everywhere. And the creepiest part? THEY MOVED! He’d go to sleep and when he woke up the bruises would be in different places. Lasted about a month. The point of this story (other than to share another weird rash experience) is his parents felt terrible, because people would stare at them as if THEY caused the bruises. And just like your situation, there was nothing they could have done.
Best of luck on Monday!
The human body is weird! Ugh – I can’t imagine how that kid’s parents felt. I’m thankful that Jax’s “Twilight Zone” rash went away fairly quickly. Thanks for the positive thoughts!
Oy vey. I know it’s all relative but you guys are getting slammed these past few weeks! I’m so glad to hear that you were at the doctors and immediately addressed his needs. It sounds terrifying, again the “not knowing”, at least this one had a quick, clear answer. Hoping that the results from Mondays MRI offer some insight and peace. Thinking of you all!
Thanks, friend. I am a ball of stress, but I will get through it. I need to start running or something!