June 28, 2011
The doctor walked into the room and said she was sorry. His allergic reaction had progressed to Drug Hypersensitivity Syndrome, which was affecting his internal organs. He was beyond her care and would need to be transferred to a specialist. She kept saying she was sorry and explaining that she was only a general pediatrician. I needed to know exactly how bad it was. She evaded my pointed question, but pretty much said that without proper treatment the progress was irreversible.
I was caught completely blind-sided. I had worried and intuition had told me that there was something more going on here, but this morning I had thought he seemed better, if only minimally so, and had finally started to let the doctor’s positivity rub off on me.
That ambulance ride must have been six of the worst hours of my life…only a daze. I’ll never forget what it feels like to be on the other side of things – family, rather than the medical professional. I wish I could say that I was full of faith, but honestly I felt quite hopeless and helpless. Just seeing his small body on the over-sized stretcher, his head buried under the oxygen cubicle, so still… Too still. Except for the vomiting.
What a relief to have him at the top medical center for his specific condition. The care here is excellent – for Thailand. I hadn’t known what to expect, and had pretty much thought that he would be in ICU. Instead we were taken to a nice room. The doctor showed up almost immediately to speak with me. But of course it was difficult for her to have all the answers as she hadn’t had the chance to do any tests or draw any conclusions of her own yet.
She informed me that he has the Stephen Johnson’s type of Drug Hypersensitivity Syndrome – whatever that is. Never having heard of all that before I’m sure wishing I had internet access to research it all out... It’s affecting his liver and Digestive organs. Both doctor’s have simply called it Hepatitis, but I think that’s for lack of a better vocabulary in English. All I truly know is that it’s affecting the liver function.
That was yesterday.
Today they tell me that we will not know ‘til another week if he will have permanent liver damage. His fever is still high, but, thankfully, instead of hitting between a 105-106, it is instead only rising to around 104 F. They’re having to cut back on the amount of Paracetemol they’re giving him though, due to the possibility of it further damaging his liver.
Another affect of his allergy is conjunctivitis and there’s a risk for possible blindness…
His diarrhea is still pretty bad, but it’s not just water anymore.
He shows pneumonia in both lungs, but it’s improved. Today his oxygen sats are better and they’re trying him to see how he does off of the O2.
His stomach isn’t as distended and hard to the touch. The other positive sign is that he’s starting taking small amounts of milk again!!!!!! They say that they’ll be able to cut down on the amount of IV fluids tomorrow if he’s able to start taking in more.
And, best of all, he’s starting to complain, making pitifully weak grunts and moaning noises in the growing amounts of time that he’s alert! (You might think it’s strange that I say best of all, but you’d know what I mean if your child was nearly unresponsive for several days... If I learned one thing in any of my limited medical training it’s that you smile happy relieved smiles when you hear a crying baby.:))
It has meant so much to know that so many of you are praying. Truly praying. Please, don’t stop!!
Although I’m feeling very relieved and believe that many of our prayers have been answered, he’s not completely out of the woods yet…
I’m told that we’re looking at about 2-4 wks in the hospital.
Posted by Maria at 9:52 PM