Collapsed Brain

So something has been "off" with Ellie for a few months now.  She has had 2 hospitalizations and many many many tests trying to figure this out.

The things that were "off"...
When I sit her up she gets sleepy for a while, and then when I lay her down she gets sleepy for a while.
No peeing
No pooping
Increased heart-rate
Occasional grinding teeth

I thought maybe we should check her shunt.  I mentioned it several times on both hospitalizations, but other reasons for her being "off" were always found...so her shunt was never looked at, although I did talk with nuerosurgery while inpatient they also reassured me that her symptoms were not shunt related.

I still felt like we needed to look at her shunt.

Maybe I need to explain...we all have fluid in our brain in areas called "ventricles".  This fluid cushions our brain so when we bump our head we don't get knocked unconscious.  A cross-section of your head would look something like this...

Ellie's brain has extra large ventricles with lots of fluid.  This is called "hydrocephalus".  She has very little brain matter, most of her head is fluid.  She has had a surgery where they place a 1 way valve (called a shunt) into the fluid and then thread tubing under her skin and the extra fluid drains into her abdomen (not into her stomach...just the area around her stomach).  This is what Ellie's brain normally looks like...

So yesterday we went for a head CT scan and a series of x-rays looking at the shunt and the shunt tubing.  Like I said, something was "off" and This was something we hadn't looked at for a while.  She had been stable for several years and the neurosurgeon felt like there was no need to keep doing 6 month or even 1 year follow-ups and just to come in if there were problems.  So her last head CT and shunt series (x-rays) were over a year ago.

Her CT yesterday was DRASTICALLY different from the year before.  The ventricles were completely collapsed.  And since the ventricles normally hold the brain in place (out by the skull) her brain has now collapsed in also.

The Dr. said (twice) that this was the most drastic case he has ever seen...GREAT!  

Her brain now looks something like this...

He left the room to consult with one of the other neurosurgeons to get a second opinion and they both felt like they should do something.

So next Monday they will be doing surgery.  They will be removing the end of the shunt tubing from her abdomen and allowing the CSF (Cerebral Spinal Fluid) (the fluid from her brain) to drain into a bag outside of her body.  They will raise the bag a few centimeters per day (higher off the ground).  This will help the fluid to drain more slowly from her brain and hopefully allow the ventricles to reinflate with fluid and her brain to be pushed back where it used to be.

They are not sure this will work, but feel like they should try.

The good news is she has not shown extreme symptoms such as extreme lethargy, vomiting, seizures, etc..

Once I found out what her scans looked like...I realized why she has been grinding her teeth.  It normally means ear infection, but now I am assuming she was saying my head is killing me.  (This was one of the things that has been "off" with her---grinding her teeth.  And yes I thought it could possible be shunt related, which is why I brought her in.  But now I KNOW that this is why she has been grinding her teeth.)

You have to know surgeons...THEY ARE COCKY and they think they know EVERYTHING.  

I asked if this could have to do with her not peeing and not pooping...he emphatically said NO.

I asked if the "Free Air" in her abdomen could have been from this...he emphatically said NO.

I asked if her spinal surgery from last August could have caused this...he emphatically said NO.

But here's where you have to take what the surgeon says and say to yourself "they don't know everything".  I REALLY hope this is related to the no peeing and no pooping.  That would be AWESOME.

They don't know if they will be able to get her brain back where it was a year ago, but they are going to try and improve it.

Surgery will be Monday and she will be inpatient for at least that week.  Then depending on how things go she would have another surgery the next Monday where they would be placing a new higher pressure shunt.  It sounds opposite, but a higher pressure shunt drains less fluid.  (It takes a higher pressure in the brain for any fluid to drain).

The Dr. said this is a case of extreme over-drainage.  He does not know why this happened.

This is bad and scary and I am nervous.

I suppose that I am comforted by the fact that yes, symptomatically she is doing well.  But her brain has collapsed for heavens sake.  How can you even survive that?  It just shows you how resilient the brain and the human body are...it is amazing creation from God.

We would appreciate your fasting and prayers over the next few weeks that the Dr.'s may be inspired to help Ellie in the best way possible if it be God's will, that God's will may be done, and comfort for Ellie and our family.