The Latest

On Saturday night/sunday morning, Monte started a seizure that lasted at least one hour, possibly a lot longer. We administered 2 meds, then the paramedics gave another. Monte and I rode the ambulance to Skaggs hospital, then a helicopter to Cox. Then the seizure stopped, but he required oxygen most of the day. We were then transferred to St. Louis Children's via ambulance (the weather grounded the helicopters). We've been here since Sunday afternoon. Yesterday he had two tonic clonic seizures (grand mal for those stuck in the 80's), one on the x-ray table. He stayed lethargic and unresponsive most of the day/night. Last night he began having a series of focal seizures (again, petit mal for those without medical education!) every 35 minutes or so. He had 11, then received another medication that seemed to have stopped them. Right now we are waiting for neurology and neurosurgery to determine the best course. Neurology is inclined to keep increasing medication...a decision I fight. We want him to need the minimum meds required, to keep cognitive and physical function. He's already at a high dose...If this is a shunt malfunction, that is causing the seizures, increasing meds will just mask symptoms that will diminish as the pressure on the brain is decreased. But to complicate things, the CT shows decreased ventricles. (Some of you might remember this happened in February, the Dr.'s were convinced the shunt was fine, then did an ICP surgery, placing a bolt in his brain to measure pressure. Normal is 10-15, he was at 25!!!)
We never want to rush into surgery, so I understand the need to make a clear decision. He has had 28 shunt revisions though, his body doesn't seem to accept them and wants to shut them down and destroy them.
However, it is hard being in limbo, seeing him so lethargic and obviously suffering and being unable to make plans. He's even leaving his IV alone, he hasn't tried to pull it out of his hand at all. This is a good thing, as it took 10 pokes, two life flight teams, and finally they pulled a chief anesthesioligist out of a heart and liver transplant to place an IV. Boy was that humbling!
He's bruised all over, dehydrated and miserable, but doesn't even seem to know it.
Please excuse my dramatics, it's been a long few days...but if I may ask a favor, we strongly believe in the power of prayer. We know that it truly does sustain us and help Monte feel comfort in this environment. Please pray for an obvious knowledge of Monte's needs, so that if it is the shunt, it will be revealed so that we can move forward, and if it is not, that he will recover quickly without needing a permanent increase in seizure medications.
Doug and Piper are staying at home for now, so Doug can work and Piper is not having to see Monte like this...it's really hard on her, as it is all of us. (Last time she started yelling at the doctors for hurting him). But everytime we talk she tells me she's ready to come pick me up.
This is hard...
Thanks for reading and caring, I will update as I can. If only I had a phone plug!!