Lab Results Came In
All of Harlan’s labs and his biopsy result are in, and it turns out that he does not have Stevens-Johnson Syndrome as the doctors originally believed. They have now confirmed it is a really bad case of scalded skin syndrome (SSS). This is good news–it means that the condition was not caused by a drug he took or chemical in his diet that we would have to worry about identifying and then avoiding for the rest of his life. The prognosis for SSS is a full recovery after treating the infection with IV antibiotics (which his doctors have been giving him since he was admitted).
Since SSS is caused by a Staphylococcus infection, Heather asked the doctors if we need to take any precautions at home to prevent future infections (i.e., are there any common sources of Staph that can be easily avoided). They explained that there was probably nothing we could have done–since upwards of 25-30% of healthy individuals carry Staphylococcus on their skin, and in their hair and noses, this could be caused by something as simple as eating a booger.
The fact that it is SSS also means that his recovery time should be much shorter than if it had been SJS. The dermatology department said that since he had been reacting so well and making such rapid improvements after the IVIG treatments, they recommended going forward with the third treatment tonight regardless.
Harlan was doing well again this morning–he ate a whole bowl of Fruit Loops for breakfast. He hates his oral medications and can be quite stubborn about taking them now since he’s been feeling better, but we usually manage to bribe him.
This afternoon the drainage tube that was attached to Harlan’s catheter started slipping out and would no longer stay connected; The nurses were perplexed as to why that started happening, as they’d never seen it before. After trying a new drainage tube and a few attempts to jury-rig it together with adhesives and tape, they finally decided to remove the catheter entirely. For now he’ll need to tell us when he needs to go so we can bring him his pee container to go in. The doctors will decide if they feel he still needs a new catheter, but hopefully it won’t be necessary.
When I left him this afternoon he had just started throwing up and complaining “my head feels tired”. The doctors have started him on another IV drug to help with nausea which will hopefully give him some more comfort from the symptoms of his infection.
Heather and I know that a lot of people who love Harlan are following these updates, and we want to thank you all from the bottom of our hearts for the well-wishes and for keeping Harlan in your thoughts.