Pupils

Thur 4/13/17 day 10

Life at the hospital is getting old and boring.  We have watched all of the edited shows that the hospital shows on their channels multiple times.  We have watched Hunger Games II about 4 tines and Princess Diaries I about 3 times. Once you make it through the movies, that means it's time to go home, right?!?!?!

 

They do have DVD's we can borrow...I think we may have to do that.

 

When we came to the floor (out of ICU) Wed night the Dr. noticed her pupils were different sizes.  She asked if this was normal for her.  I said no.  But I wasn't concerned...she has an abnormal brain, seizures, hydrocephalus, etc.  We decided to just watch it.  I was hoping it was temporary and meant nothing.

 

 

 

Wed night was rough...lots of desats...lots of secretions...lots of suctioning.  Not much sleep. 

 

She was super tired Thur morning.

 

And her pupils were still different sizes.

 

She was so sleepy we couldn't do a breathing trial that morning.  Because we have only been doing trials while she is awake.

 

So with the pupils and sleepiness I started to worry.  My mind went immediately to her hydrocephalus.

 

Hydrocephalus means an increase of fluid in your brain.  They used to call it "water on the brain".  They do not call it that anymore.  It is technically water IN the brain.

 

We all have fluid (spinal fluid) in pockets in our brain.  It serves as a cushion when we bump our head.  Our body produces it and reabsorbs it.

 

Ellie has a larger than normal amount of fluid in her brain.  This is called hydrocephalus.  Her pockets are much larger than normal allowing there to be more fluid.  A larger amount of fluid is not necessarily harmful.  It becomes a problem when the fluid becomes under pressure.

 

Pressure can happen for several reasons.  Think of a kitchen sink that is filling and draining at the same time.  The water may be filling too fast for the drain to empty.  Or the sink may be filling at a normal rate, but the drain is not emptying as fast as it should.  It doesn't matter where the problem is happening, you need to relieve the pressure in the pocket.

 

To relieve the pressure you have to have an operation called a shunt.  The neurosurgeon drills through the skull and brain to get to the pocket of fluid.  They put a shunt into the fluid.  A shunt is a one-way valve, only allowing fluid to come out of the brain, but not back in.  It only allows fluid out when it reaches a set amount of pressure.

 

The one-way valve is connected to several feet of tubing.  The tubing runs under your skin and drains into the cavity by your heart or your abdomen.  Ellie's drains into her abdomen.  (not her stomach).

 

Ellie ahs had 3 shunts in 14.5 years (only 1 at a time).  That is really good.  Shunts are known for failing.  Sometimes people will have to get multiple shunts every year.

 

Several years ago her shunt failed and over-drained.  The pockets in her brain were empty, so the brain collapsed in and pulled away from the skull.  This caused her brain to bleed between the brain and skull.  It involved a 3 week hospital stay and 3 surgeries.  It was big and bad.  The 2 most experienced neurosurgeons at PCH individually told me that this was the worst case they had ever seen.  They got her through and got her brain back to 85% the way it had been before.

 

The only symptom she had when her brain collapsed was that when I would sit her up, then she would be sleepy for 5-10 minutes.  Other than that she acted fine.

 

So with her being sleepy and her pupils being abnormal I thought it could be her hydrocephalus.

 

So Thur morning the Dr. called for a consult from neurosurgery.

 

She was still sleepy, but I had a lunch date with another special needs Mom in the cafeteria.  I told the nurse before I left that I don't get cell reception in the hospital.  So if she needed me, she would need to page me overhead.

 

She was still sleepy when I left to go down to the cafeteria and occasionally desatting.

 

We were almost done eating and chatting in the cafeteria when I hear an announcement over the intercom.  "Will the parents of Eleanor __________ please return to her room?"

 

I jumped up, said goodbye and literally ran as fast as I could up the 3 flights of stairs to her room.

 

During my run I thought, "I didn't hear a code blue."  But I still expected to see 20 people crowded in Ellie's room and her to be intubated, or worse.

 

As I got closer to her room there were NOT a bunch of people there.  The nurse told me that neurosurgery came by and wanted to do a CT scan and x-rays to look at her shunt and brain.  They were ready for her now, so they paged me.

 

Whew.

 

My daughter was not dead.

 

I am glad they paged me, but I wish they could add something on the intercom like "this is not an emergency, but please return to your child's room."

 

Although then I wouldn't have gotten my 5 minutes of exercise in for the day...ha ha!

 

We did the scans and everything came back unchanged.  The shunt was working fine.  That was good and bad news.  Good because her brain and shunt looked stable, bad because what does that mean for her pupils?

 

She did wake up for a few hours after the scans and we were able to do 1 (2 hour) trial off bipap.

 

Another rough night Thurs night.  5 plus desats.