Diagnosis: DRESS

The past few weeks have been a terrible nightmare. But finally, we are getting some answers after so much uncertainty, fear and anxiety.

After battling bacterial staph meningitis and possibly a tinge of chemical meningitis, the latest high fever and rash have been diagnosed as DRESS - otherwise known as Drug Rash with Eosinophilia and Systemic Symptoms. The actual medical definition is: 

Drug hypersensitivity syndrome is sometimes also called Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS), and Drug-Induced Hypersensitivity Syndrome (DIHS). Drug hypersensitivity syndrome is a severe, unexpected reaction to a medicine(s), which affects several organ systems at the same time. It most commonly causes the combination of a high fever, a morbilliform skin rash and inflammation of one or more internal organs including the liver, kidneys, lungs and/or heart. It generally starts two to eight weeks after taking the responsible medicine.

In a nutshell, doctors think he has a penicillin sensitivity and now we wear the band to let all the health team know about it. We are so grateful that we were here when this all happened. The rash continued to spread, worsening from we posted in the other photos. We switched antibiotics and now finish our 21 day course tomorrow when we will hopefully (fingers crossed) have our PICC line removed and be transitioned onto oral medications. 

We still have a road ahead of us. Blood tests weekly for at least a month, follow up appointments and CHOP and steroids for at least several weeks, perhaps months, sedation to have his stitches removed. I can't even believe how fortunate we are to have been in CHOP with doctors who knew what they were looking for, took quick action and we caught this before what could have been pretty devastating consequences. We are well aware that all your prayers protected him (and us) from some very scary things. 

Today, we were moved to a step-down unit where we have our own room and we were so thankful to eat in the cafeteria! He has been asking for this for a while now and today he got his wish.

Steroids are in full force now that we have moved from IV form to pills, and have kicked in both in attitude and appetite. For dinner he had a chicken and cheese sandwich with - what else but BACON - (we are trying to ignore the latest health reports for a little while), a noodle bowl, two drinks, a bag of Cool Ranch Doritos and two Italian Ices. I can't even believe how hungry this kid is.

And with a lot of coaxing, we have been able to get him to drink bone broth, take vitamins to promote healing. He hates it. But even does it with a smile. 

That's the smile that keeps us going. We are so proud of our little fighter and his unrelenting spirit. We are beyond thankful for the continued prayers, meals, calls, texts, posts from friends, family and complete strangers. Thank you everyone for doing so much! We are eternally grateful. <3

Genius bar, anyone?

So we are getting cheeky in our 1+ month stay at CHOP. 

We've definitely had our share of ups and downs. The experts (Infectious disease, dermatology and neurology) highly suspect the rash and associated fever to be an allergic reaction to an antibiotic. Which antibiotic, we aren't quite sure because it seems to be a delayed reaction and he has been on 4 different antibiotics. Bloodwork and CSF fluid cultures point to it as well, which is actually not the worst thing so we are hopeful we can keep the rash under control. He is under tight watch here in the ICU in the meantime. It seems to flare up, and then settle down with the steroids. The hope is we will get this under control soon and can go home this week.

 He is getting a little sick of the solo pics him so he wanted both of us today.

In the meantime, he's back to his jokes and shenanigans. The good ol' fashioned whoopie cushion now has an "app" so he's been having fun with the nurses and getting stern talks by mom on a regular basis. 

He has been spending a lot of time online trying to catch up on school work (1%), playing Minecraft (94%) and Facetiming friends (5%). As such, we thought after all we have been through, we would get him a computer, with a promise he will spend more time doing schoolwork. So a few weeks ago we got him a Mac. 

Fast forward to yesterday, when they were still ruling out causes of the rash and decided to do a strep throat culture, 10 minutes after breakfast. Probably not the best time to do a throat swab. Without going into graphic details, Cannon's gag reflex kicked into full gear and he threw up all over his brand new computer. 

It is not working now.

So now the world has ended because there is "nothing to do". 

Now, we are doing boring stuff like playing cards, Dominoes... even talking to each other. Ugh! This stinks!

Hard to believe it's November already. Hoping we can turn the corner with all of this and get back to normal soon. Normal never felt so good.