EEG and We Need Your Prayers

Mason's seizures are a continuing mystery. After building up on phenobarbital, realizing the med was making feeding difficulties worse, and then weaning off it over 9 days, the seizures have gotten much worse and much more frequent. What's making things confusing is we don't know if these seizures are narcotic withdrawal symptoms in general (from being on Fentanyl and phenobarbitol - the symptoms of narcotic withdrawal include seizures, stuffy nose, temp issues, GI issues, sneezing, irritability, uncoordinated feeding/swallowing, tremors, etc - all of which he's had in the weaning phase - or if all his symptoms are due to his own underlying disorder. One thing that is pretty unique about his seizures is that his temp shoots up fast right before them - he gets very red in the face, and his temp rises over an entire degree to 99.5 or 100 within moments. So keeping him cool in the past had seemed to help prevent them, but right now we are unable to really prevent these temp spikes; even being on Tylenol or almost undressed does not always avert them. We need to know the origin of the seizures so we can know what to do for Mason on feeding, and what med to use, etc... if Mason's feeding issues are due to withdrawal they might get better soon, as might the seizures (his feeding initially improved going off phenobarbitol, so we were optimistic it was a large part of his eating problem, but then the other symptoms hit and more seizures and his eating has declined again dramatically). If not from withdrawal, and they are due to his own inability to eat because of hypotonia or other issues, we should probably get a G-tube and go home...but that would mean more surgery and probably Fentanyl (it's the drug he gets for pain relief post op) and thus more withdrawal and possible seizures. Also there is the possibility that his seizures are metabolic in nature (from a missing enzyme or vitamin deficiency due to deleted genes, etc) but there are so many possible tests to run that they don't even know where they would begin.

An overnight EEG to capture seizure activity is going on now. Already one seizure has been recorded on it tonight, and another one earlier today before the EEG started. These are scarier seizures than I have seen from him yet (from a mom's perspective), because they start out by his heart stopping (asystole/flatline). It is also a very, very rare thing with seizures in general. Please, please pray his brain is not being damaged from these episodes and that his heart won't continue to stop with the seizures, and that they can be controlled soon and that God would grant wisdom on what to do re: the G tube and seizure meds.

In light of all this, here's what my head and heart knows and I'm trying to keep in mind for tonight...

GOD IS GOD (AND I AM NOT...)

And the pain falls like a curtain
On the things I once called certain
And I have to say the words I fear the most
I just don’t know

And the questions without answers
Come and paralyze the dancer
So I stand here on the stage afraid to move
Afraid to fall, oh, but fall I must
On this truth that my life has been formed from the dust

God is God and I am not
I can only see a part of the picture He’s painting 

God is God and I am man
So I’ll never understand it all
For only God is God

And the sky begins to thunder
And I’m filled with awe and wonder
‘Til the only burning question that remains
Is who am I

Can I form a single mountain
Take the stars in hand and count them
Can I even take a breath without God giving it to me
He is first and last before all that has been
Beyond all that will pass

Oh, how great are the riches of His wisdom and knowledge
How unsearchable for to Him and through
Him and from Him are all things

So let us worship before the throne
Of the One who is worthy of worship alone
                     - Steven Curtis Chapman