I Know God is In This!!

Yesterday I heard this song on the radio and it was so the cry of my heart right now, trying to figure out what is going on with Mason and his seizures and other symptoms that seem so inter-related with his meds/withdrawal stuff, and whether we need the G-tube or whether we need to wait it out and see if things get better on their own...a "REVELATION" is exactly what I feel like I stumbled upon through God's prompting tonight, (as you'll see below); please pray that the docs are really responsive to the information I want to discuss with them tomorrow as it sounds extremely relevant to Mason's case.

REVELATION 

My life has led me down the road that’s so uncertain
And now I am left alone and I am broken,
Trying to find my way...

I know that you are holding all the answers
I’m tired of losing hope and taking chances,
On roads that never seem,
To be the ones that bring me home
Give me a revelation,
Show me what to do
Cause I’ve been trying to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without You

I don’t know where I can turn
Tell me when will I learn
Won’t You show me where I need to go
Oh oh
Let me follow Your lead,
I know that it’s the only way that I can get back home

Give me a revelation,
Show me what to do
Cause I’ve been trying to find my way,
I haven’t got a clue...

                     --Third Day

Well I sure didn't have a clue and may not completely still on the G-tube question, but today, after looking up one of the genes Mason is missing, may have come across just that - a tiny clue to a piece of the Mason puzzle right now. I found out that one of his missing genes, ARRB2, is for a protein called Beta-Arrestin 2; the first time I looked it up in the medical lit I didn't find a lot of info about it or what it does, at least not that seemed completely relevant at the time, but for some I reason felt compelled to look it up again tonight. What I found this time was a host of articles about how mice who have had this gene deleted so they are deficient in Beta-Arrestin 2, REACT IN A COMPLETELY UNIQUE WAY TO OPOID DRUGS (IE, Fentanyl and phenobarbitol!) than other mice... their whole response of drug tolerance/withdrawal is fundamentally altered!!! They have an extremely LOW tolerance to these drugs yet still become physically dependent on them. You can read all about it in PubMed searching Beta-Arrestin 2 and opioids (if you are interested in medspeak) but here is the main info of interest to me, excerpted:

Beta-arrestins, a family of regulatory and scaffold proteins, are well-known negative regulators of G-protein-coupled receptors (GPCRs) including opioid receptors...We have previously reported that mice lacking the G protein-coupled receptor regulatory protein, beta-arrestin 2, display profoundly altered morphine responses. beta-Arrestin 2 knockout mice have enhanced and prolonged morphine analgesia with very little morphine tolerance. Here we show that in mice lacking beta-arrestin-2, desensitization of the mu-opioid receptor does not occur after chronic morphine treatment, and that these animals fail to develop antinociceptive tolerance.  However, the deletion of beta-arrestin-2 does not prevent the chronic morphine-induced up-regulation of adenylyl cyclase activity, a cellular marker of dependence, and the mutant mice still become physically dependent on the drug. 

(Jen's translation - the mice with the missing gene don't need much of the drug at all for it to give them a buzz/relief of pain--they are very sensitive to its effects). At the same time they still become addicted to the drug and if they don't get the drug they will have withdrawal.

Another article says, "inhibition of beta-arrestin 2 function might lead to .... potential new avenues for the study and treatment of pain, narcotic tolerance, and dependence."

Anyway the point is Mason doesn't have the gene either and this fact is probably playing a HUGE role in why he is having withdrawal symptoms that make absolutely no sense to the docs (since he was not on big enough doses of anything to cause these problems in other babies who do have Beta-Arrestin 2). The neurologist today acknowledged Mason was still having withdrawal symptoms from Fentanyl which he took 8 weeks ago, but could not explain why or if the seizures were from the withdrawal or not. Pray for me tomorrow as I talk with the neonatalogist about this, that they would realize the significance in his treatment (they are really pushing the phenobarbital but we do not want to do something that they are not going to be able to understand or manage its effect on him, if it is going to make him sicker or less himself or less able to feed due to its strong effects). Pray this info leads to really good things for his treatment and helps the docs get a better handle on what may be going on!! This is a teaching hospital, so pray they are eager to research and learn, to help Mason and potentially lots of other people!

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