6-year-old Great-Nephew -- Stevens-Johnson Syndrome

MBombardier · Post by **MBombardier** » Sun Dec 08, 2013 11:54 am

Hi! I'm sorry about not keeping you all informed about Austin. I had forgotten I posted about him.

Austin is not doing as well as hoped. He is still on the respirator. They tried to take him off the day after his eye surgery but he was working too hard to breathe and got tired, so they put him back on less than 24 hours later. They have scoped his lungs to see how they are healing and they are not healing yet. The most worrisome thing is that he has both strep and staph infections in his lungs. They did not want to give him antibiotic because of its relation to SJS (see Carol's post above) but it's gotten to the point that they have to.

Please keep praying for this little guy. Apparently there are no more lesions showing up but the ones that are there are continuing to blister and are not healing yet.

mzh · Post by **mzh** » Mon Dec 09, 2013 7:00 pm

Oh man, that's is terrible. Sorry you don't have better news but I hope it gets better soon.

Trish RN · Post by **Trish RN** » Tue Dec 10, 2013 6:14 pm

Just catching up myself. I am so sorry Marliss to hear of this little guy suffering with Stevens-Johnson syndrome. I
have only seen this condition once in my career. All ER's have a "What to do " book so we can identify this in a patient. Usually it is medications that trigger this...specially antibiotics.
My prayers are with Austin and his family. Also praying that the medical personnel will be guided in his treatment.

Take care,
Trish

Zizzle · Post by **Zizzle** » Tue Dec 10, 2013 11:18 pm

I've had Austin on my mind, and my 9 yr old son developed a sudden rash on his chest and back this week. SJS crossed my mind. I can't imagine what the family is going through, and the poor little guy. I'm so sorry Marliss.

I think I have identified my son's rash -- it looks like a cross between mini-hives and ringworm -- Pityriasis Rosea. Very common in young people, probably viral, and totally benign and self-limiting. With a history of Dermatomyositis on my side, chronic idiopathic urticaria and eczema on my husband's side, we take skin very seriously in our family!

We all tend to take our skin for granted, other than for cosmetic concerns, but it is our largest vital organ!

Please keep us posted. We are rooting for him.

MBombardier · Post by **MBombardier** » Wed Dec 11, 2013 4:32 pm

Austin update: The respirator is out, and Austin seems to be doing fine with a little oxygen. He can't swallow yet, and he's very weak. The physical therapist is working with him. He's having a hard time following commands and almost acts like he can't hear or doesn't understand. A gal who had a daughter in PICU for 60+ days told his mother to tell him repeatedly what is going on and why he's in the hospital, etc., because with the high sedation he may not remember anything when he wakes up from a sleep and it may all be new to him.

This is all new to me, too. Thanks for your prayers and concern!

Martha · Post by **Martha** » Wed Dec 11, 2013 8:09 pm

Dear Marliss,

I'm sorry to hear about Austin, and his major health challenge. It's good that the doctors felt he is now doing well enough to have the respirator out. This whole thing has surely been traumatic for his system; hopefully he will begin to respond more to outside stimuli.

Please know that we are all concerned and praying for him and his family.

Love,
Martha

MBombardier · Post by **MBombardier** » Sat Dec 14, 2013 8:11 pm

Austin update: The doctors took some of the plastic and membranes out of his eyes this morning, and said that his eyes have healed perfectly! I don't know what this means for his sight, but it sounds very positive! He had face time on the phone with one of his brothers on Thursday and he actually smiled. This was good to see, especially after the nurses took him on a little wagon ride down the hall and he didn't like it.

Here is a photo of Austin my sis-in-law took this afternoon. He still can't swallow or talk and is very weak, but God willing, this little boy is starting on the long road to recovery. He's still got a week or so in the PICU burn unit, I think, before they move him to a regular room. Thank you for your thoughts and prayers!!