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.
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