Marching

When William was in the hospital with Stephens-Johnson, my worst difficulty was that the disease was self-limiting. This is a term which means there is nothing doctors can do. There is no fix. Keith thought this was a good thing. The disease will take care of itself. For me this was an earth shattering horrible thing. There was nothing I could do. Nothing the doctors could do. No medicine. No treatment. If the disease decided to blind my child, he would be blind. If necrosis set in, then he would die. I had to sit in a chair day after day and watch my child get closer to death and there was nothing I could do.

Every day I would go to the hospital in the morning refreshed and hopeful (poor Keith slept up there and was never refreshed, although he was hopeful). Today William would turn around (the other thing about it is that no one can predict the cycle). Today he will be better. Every day he was worse. Every day he lost another function. About day 8 William got a mysterious rash and the SJS turned internal. How was I to monitor the progression of the disease when I can't see where it is or what it is doing? No one can see if the skin is going through necrosis. They don't know what is happening. What does the strange rash mean? It's not text book, and no one knows.

I went home that night without hope. I went home knowing my child would die. I prayed. I cried and prayed through my tears. I told Heavenly Father all about my worries and begged and pleaded for comfort and assurance. Let me say that my prayers have been answered tangibly and audibly before. My patriarchal blessing says 4 times I have the gift of revelation. I had every expectation my prayers would be answered. But I received no comfort. I received no assurances. The pit in my stomach and ache in my heart were still with me at the conclusion of my prayer.

I have known death. It is not a mystery and the only thing you learn by knowing death is that it's not special. It's not reserved for other people. It can and will be for you. I looked up finally and saw Keith's scriptures on the dresser. The thought popped into my mind, "If you want to talk to Heavenly Father, pray. If you want to hear his words, read the scriptures." I got up and got the scriptures. I took a breath and tried the magic scripture trick where you let the scriptures fall open. They fell open to Alma 56. It starts with a description of a war. I was totally discouraged. This was not an answer. But I read on. The 2,000 warriors broke from their normal lives when they saw a need and took up arms to fight. They marched. I read two columns and kept seeing the word "march". They were tired and they marched. They were hopeless and they marched. They were unprepared for the challenge and still they marched. They were hungry and provisions were supplied so they could continue their march. I started to get the message. They fought a hard battle that they were not trained for. And in the end,

"But behold, to my great joy, there had not one soul of them fallen to the earth; yea, and they had fought as if with the strength of God; yea, never were men known to have fought with such miraculous strength..." Alma 56:56
I was marching. I was unprepared for this and I was so tired. Provisions were sent to me frequently. People, stuff, ideas. I had to keep marching until it was over, and I wasn't in charge of when that would be. I thought I could trick or coax William to get better. Just eat. Just sleep. Just call another doctor. I couldn't. I just had to keep marching.
My prayer was answered. I got the message. I went to the hospital the next day, pulled up a chair, exhaled and waited. William got better eventually and not one soul was lost.

Dear Parent of Stevens-Johnson Syndrome Patient,

Dear Parent of Stevens-Johnson Syndrome Patient,

This is my letter to you. First let me say how sorry I am your child has Stevens-Johnson Syndrome. It will make you feel like modern medicine is as effective as consulting a shaman (no offense to all shaman out there.)

 

Let me begin by telling you what you see. It started with pneumonia. An atypical one that is hard for you to catch because you don't carry a stethoscope with you in your purse. A doctor can but only with the tool. So don't feel too bad. The pneumonia will respond to antibiotics but only Zythromax because it's caused by mycoplasma. So on day 3 when the Augmentin isn't working you will know what to do.

Then their breath starts to really stink and they stop wanting to eat even though their oxygen levels are up.

It will take most doctors days to diagnose (after all they only see this once every 7-10 years). It took our hospitalist 5 days to finally cave to the diagnosis. Here are the suspects you might get: cocksaki, strep, mono, adenovirus. Then they might want to suck snot from your child's sore infested nasal cavity to check for everything else that is not on the short list. Don't let them do this. They are just following protocol and not thinking it through (get ready because they do this a lot).

Your child will have the following tubes so don't try to fight it:

 

IV. This is good because now pain meds can be given and avoid the mouth (although before this ask about debactoral which is a codine that is taken orally but doesn't have any alcohol so it doesn't sting going down). Also you don't have to worry about dehydration.

Foley Catheter. As you know SJS attacks the genitals and your child probably will have sores externally and internally. They tolerate this tube well even though they don't move around as (my kid still asks for his own wheel chair).

Feeding Tube. This one really bugged me and I resisted for days. In retrospect I wish I would have just put it in on day 3. If they get behind on their nutrition it takes longer to heal. The tube is tiny and with enough meds they can tolerate this too. The trick is enough meds though. Don't forget to ask about Toredol. It's an anti-inflamitory and this with Loritab was a magic mix.

 

Your battle with SJS, because there is no treatment and it is self limiting (ignore the awful pictures on the Internet-there is no reason to think your child will look like that), is nutrition and pain management. Your child will heal. You just have to make the environment as comfortable and productive as possible.

Doctor management. Realize in most cases the certainly the residents and probably the doctors don't know much about SJS. Ask for specialists. The ophthalmologist did eye drops so when the sores in the eyes were not being moved overnight they would not crust over and cause scar tissue. The derms had other ideas. None of which the hospitalist caught. The doctors will ALL be very interested in your child, kind of like a rock star. Tolerate this as long as you can or not. You are under no obligation to provide medical students an education. All you have to do is tell them to leave you alone. Then tell the nurse to contact the hospitalist directly.

Your kid might not follow the steps of SJS the doctors set out for you. My kid broke out into another skin rash on day 6. No one could have predicted that. It was benign and just the cycle of his body. You can be comforted if within 5 hours the sores have not covered the body. You can be comforted if the sores don't go through necrosis (tissue dying).

 

Remember you are your child's advocate. As doctors follow protocol make sure they are thinking about it. Ask questions. Like, does the heart monitor need to be beeping all night? SJS patients are not at risk for heart failure so this is just part of the procedure. How much more weight can the child stand to lose (and the answer is just do the feeding tube--it can't hurt). Also the doctors may not appreciate the intensity of pain within the 5 minutes they are in the room. It's your job to be persistent and convincing. Making nice with the nurses will pay off. They will try harder to make your kid comfortable.

 

Also, SJS can't be coaxed. All the trickery and distraction will not help your child feel better or get them to eat. Pull up a chair and a trashy magazine and get comfortable because you're going to be there a while. The good news is your kid will be whole again. They will wake up one day and say, "What's for breakfast?"

A dermatologist told me on day 5 that two weeks after we got home from the hospital I wouldn't remember what I was so upset about. It's been 4 and I still remember. But my kid doesn't. Good luck and God bless.