what we know, and don't

my usual words have not failed me, but i fear if they escape they will bear truth to a reality my soul is not ready for. and so i present you with the facts and suppositions as we, and the doctors, now know them.

after surgery, isaiah began having a seizure. they checked his blood sugar, which was low, and believed it due to that. a cat scan of his head was ordered just to be safe. the cat scan revealed bleeding on his brain as well as swelling of his brain. it is believed that due to the combination of spinal fluid lost during the surgery (this is normal) and the increased pressure on and enlargement of his cranial blood vessels (due to his heart anatomy, all cranial vessels drain to gravity, which is not an easy task) that one of his blood vessels tore/burst and the bleeding occurred. After the first cat scan, he began "posturing", which means stiffening his body in response to physical stimuli. This is a function of the brain stem, and I'll explain in a moment. They went for a second cat scan, which indicated bleeding was the same, and possibly the swelling of his brain was less. In addition to his two i.v.s, the cardiac surgeon was called to put in a central line, and radiology put in an arterial line. he is currently receiving large doses of anti-seizure medications. He continues to "posture" and show some other types of movement, such as a raised leg or arm. Our neurosurgeon let us know she is very worried due to the posturing/stiffening. As a function of the brainstem, it is a very basic response to stimuli (touching, etc) and can be indicative of brain damage. Although his heart function doesn't seem to be compromised (any more than usual) they have started milrinon, a strong drug, to aid in heart function. They are trying to balance the needs of his blood/drainage system by keeping him semi upright, while recognizing that it could lead to increased strain on the surgery site and spinal fluid leakage. There is no perfect fix and no knowns. If he is nuerologically unchanged, they will do another cat scan at 5am. If he deteriorates, they will do one sooner and determine if he needs to go to the operating room to relieve pressure on his brain.
this has been a very difficult day, one of the worst. we are trying to hope for the best, but we are also trying to prepare ourselves to meet a very different child, one with brain damage. we will update as we know more in the morning. please also note, we are not talking about this with joey at this time.