Nothing that I can say tonight is as important as this. Please pray for a little boy whom I have taught in Sunday School, Nicholas Clark. What is written below was posted by his mom, Jenn, who is a friend of Brenda's. Susan and Nick's grandmother Kathy, have been close friends for many years and I also count her a dear friend. I know some real prayer warriors read this blog. I hope you'll join me in praying for Nick. Belinda
I'm not sure if this post is going to be restricted to a certain number of words...if so I'll have to start over and create a document. (Don't know much about Facebook groups.) I'll give it a shot though.
We took Nicholas up to the ER about two weeks ago, because he had a very sore throat and had for several days. (It was late, which was why we didn't go to the clinic.) They examined him and told us that there was nothing wrong that they could see. This past Thursday, Jim took him to the hospital again because he had been up with me all night, complaining of severe pain in his face, armpits and groin. It also hurt him to close his eyes, which was the main reason he couldn't sleep. We also noticed that the area behind his ears was bright red and peeling. At the hospital they said he had two separate problems: an extremely bad case of strep throat which had been left untended for so long that it was bordering on scarlet fever, and a bacterial infection (like impetigo) behind his ears and in his groin which they said was due to poor hygiene. The extreme pain in his face and armpits was caused, according to them, by the fact that his lymph nodes were badly swollen from the strep throat.
He was given a prescription for antibiotics and got back home around 9am. He spent about 6 or 7 hours in bed, resting, and then I took him upstairs to watch some tv because I was worried about him getting too stiff. (He couldn't really change position at all; it was too painful.) He couldn't lie down, so he just sat on the couch while I went to make supper. After about an hour, he started calling for me in a very panicked way, and told me that he felt like something was crawling on his back. When I went to look, I found that a large, grapefruit-sized area of skin on his back (where it had been touching the couch) had formed into a blister and was sliding downwards. I immediately woke up Jim, and he took Nick back to the hospital.
He was seen about three hours later, and eventually a retired specialist from Sick Kids was called in to see him. He didn't tell us exactly what was wrong with Nick, but he said that it was going to get much worse very quickly, and that he needed to be sent by ambulance to Sick Kids. I was told this over the phone by Jim's mom, so I called Jim who had since gone to work and we rushed up to Alliston. In the three hours or so that he had been at the hospital, blisters had also begun to form on Nick's chest, stomach and chin, and his back was getting progressively worse as well.
I went with him in the ambulance, and we arrived at Sick Kids at about midnight. We spent the night in a private room in the ER, and many different doctors came to see us. Eventually it was explained that Nick has Stevens Johnson Syndrom. It's also known as TEN, which stands for toxic epidermal necrosis. It can be caused by various things but is most commonly a reaction to medication--in Nick's case, they're fairly sure it was caused by the anti-seizure meds he is taking. Essentially the immune system overreacts to the drug, and an auto-immune reaction causes tissue all over the body to slough off. Mucous membranes are affected as well, and internal tissues are often involved.
Nick was taken in to surgery at 10:30 on Friday morning, and his surgery took four hours. What they were planning to do was debride the dead tissue, clean him, and bandage him. Unfortunately, as they began to clean him, most of the rest of his skin sloughed off as well. They ended up having to remove the top two layers of his skin, from his head to his knees. (Including his face and his scalp, which they shaved.) The only original skin he now retains is from his knees to his feet, and his hands. They also found that his trachea was swollen, and may start to slough tissue as well, so they decided to leave him intubated to ensure that he can continue to breathe.
I need to stop for now and go back to Nick, so I will just say quickly that although his appearance at the moment is monstrous and frightening, and he is in a horrendous amount of pain, my boy is being so very brave. They are managing his pain with a combination of morphine and Tylenol, and he is heavily sedated to keep him from becoming too agitated. He is aware of his surroundings much more today, is able to answer questions by shaking or nodding his head, and makes lots of hand gestures to try and communicate. (For example, this morning he told his nurse in no uncertain terms that he wanted his Mommy to swab out his mouth, and not her!!)
Please keep us all in your prayers, and I'll try to update again soon.