Thursday, June 4, 2009

Speaking of not wanting to leave for a week...

Got a letter from Emeric's doctor today in Houston. It's called an "Interdisciplinary Plan of Care" to give to his doctors, use at the ER, etc...


Emeric has a suspected metabolic disorder. Individuals with metabolic disorders have decreased tolerance to minor illnesses and fasting states and are prone to rapid decompensation. Any change in Emeric's condition should be taken very seriously as he can quickly become fatally ill.

Metabolic disorders are genetic diseases that result in a deficiency of metabolism. All cells need appropriate metabolism to function and metabolic disoders may involve any organ system: brain, muscle, nerve, eyes, hearing, endocrine, cardiac, hepatic, immune, renal. Symptoms become severe during ordinary infections, with exercise(exertion), with stres, or even with heat. Any of these conditions may precipitate a "metabolic crisis". During a "crisis", the patient's organ systems begin failing one at a time. A crisis can develop as slowly as over several weeks or as rapidly as over several hours and a patient with a metabolic disodrer may go from talking and walking to intubated in the ICU within a very brief period. Very few patients survive a metabolic crisis, but with early intervention and supportive care, it is possible.

Emeric's symptoms include: Epilepsy, macrocephaly, GI dysmotility, nystagmus, developmental delay, autonomic dysfunction, reflux, aspiration, dysphagia, poor temperature regulation with easy overheating, decline in neurologic status even with minor illness. so much for helping in the care of this complicated child.

My mind is real at ease now. Not that I didn't know this all before but because seeing it written down makes it more real.


A day in the Life... said...

I am sure seeing it on paper does make it harder. Hey and I think I forgot that info for the walk that you gave me.. Can you email me the flyer and mail the rest??

ben and erin said...

oh wow... i'm praying that God will give you peace of mind as you're gone and that the letter won't have to be used at all!

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