Wednesday, February 26

Unexpected Events

I've started writing this post officially only once already but I've been writing and re-writing it in my head constantly for the last 36 hours.  And yet still I can't find the words.

Likely in large part because I'm still processing the events of yesterday.  I was so completely blindsided that I feel like someone smacked me and I'm still reeling as a result.

On to the story, I suppose. 

A little background is usually a good starting place.  Bryce began seeing a new neurologist at Texas Scottish Rite Children's Hospital in Dallas about a year ago.  We've been overwhelmingly happy with the change.  Never looked back once - not in the hours spent driving to and from, not during the long nights alone with Bryce in Dallas hotels, not once.

At one of those previous visits it came up that Bryce had never (at least not since leaving the NICU) had a full, sedated MRI of his brain.  We discussed the fact that the results wouldn't change his treatment plan - or Bryce for that matter.  But might be helpful if down the road he began having seizures or some other issues, it would be good to have a baseline MRI for reference. 

And so back on January 7th, Bryce and I loaded up for Dallas and a sedated MRI.  The next morning went smoothly and quickly and we were home by mid-afternoon.

A week later I received a phone call from our neurologist's nurse explaining that the doctor wanted us to know that he had seen the scan results, that Bryce's shunt was functioning well and that there was significant brain damage, to both hemispheres, but nothing unusual and we would review the results with the doctor in office at clinic in February.

Well, that day in February was yesterday.  And in hindsight I'm fairly certain the doctor had seen the scans but had not actually studied them until quite recently.  Probably in preparation for our appointment yesterday.  But we weren't looking for anything or expecting to see anything unexpected, so why would he have?

The beginning of the appointment went as usual.  The nurse comes in and asks a bunch of questions to the tune of what's new, what's his schedule, therapy schedule, any pain, blah blah blah.  She then relays that information to the physcian's assistant who comes in and chats us up for a few minutes before sending in the first therapist. 

Occupational (fine motor skills) therapy came in and took measurements of Bryce's range of motion in his hands and wrists.  We had a good long talk about some things we might try to get him more independently dressing himself (wouldn't that be nice) and she gave me some very useful printed information on key guards for iPad communication apps that we previously thought didn't exist.  All is dandy.

Next we take Bryce to the big office area/nurse's station behind the exam rooms so they can take video of him walking.  We do this every time and it reassures me that they are paying attention to, tracking and measuring every single thing I think they should be. 

Meanwhile, I see the doctor for the first time while the whole team and a bunch of other strangers watch Bryce follow me from one X to another X and back, and back again, and so forth for about 8 round trips videoed from two separate angles. 

I overhear the PT (physical therapist - gross motor skills) saying to the OT that he bets Bryce can walk a couple of feet on his own.  After the video he asks if he can and Bryce is more than happy to oblige, i.e. show off.  Every one is very impressed and we return to the exam room.

The doctor follows us in, makes some short small talk and then asks me to come back out with him to the computer, "there are some things we need to talk about."  Ominous.  Surprising.

I grab my notebook, pen and Bryce and start heading that way when the physcian's assistant offers to take Bryce so I can focus better.  Clue number 2 that something else is going on.

He's happy to go with her and the OT to play with stickers and flirt.  And I'm happy for the opportunity to take proper notes.

We begin reviewing the MRI and the damage to Bryce's brain.  The cerebellum is "reduced in size."  It controls coordination and balance.  I can clearly see the area that it is supposed to fill but doesn't even come close to. 

Dr. Delgado explains that the fact that Bryce can get out of bed or sit up is astounding and the fact that he is able to take independent steps is proof of the plasticity of the brain.  He cannot be using his cerebellum for coordination and balance, there isn't enough of it left for that.  He has figured out a way to rewire his brain to use a different part of it to control his balance and coordination.  I take this as truly fantastic news!  I see this a proof that there is hope that despite the severe damage to his brain, he has the ability to overcome so much, to do so much.

The doctor goes on to explain that there is scarring to the white matter on both sides though the damage on the left (which controls speech and the right side of his body) is more significant.  The brain hemorrage (bleed) he had just after birth was worse on that side and his right side is his weaker side, so I'm not surprised by this.

Bryce's brain bleeds were an Intraventricular Hemorrhage

He had a Grade 3 bleed on his right side and Grade 4 bleed on his left.

And to further demonstrate how truly amazing he is (I'm not biased, it's science y'all) - you can see he had a 50% chance of surviving and 0% chance of not being handicapped.  He has overcome so, so much.

There are some cysts in the center of Bryce's brain, probably where the bleed began and nothing that we need to be concerned about.

His corpus colosum is very thin, because both sides of his brain have damage the pathways have been negatively effected.

The corpus callosum is the bundle of brain fibers that connects the two sides of your brain.
His left-side brain stem is smaller as a result of his prematurity.

And then he finally gets to the thing I've been wondering about. 

There are several images on the screen, one showing the profile of Bryce's head with an arrow referencing the depth that the detail view shows.  MRI's take "pictures" in layers from top to bottom.  But the biggest and center image, the one that he hasn't touched or talked about, or changed, has a spot marked with a measurement of 6.82 mm.

He explains to me that this is Bryce's pineal gland.  That it is too big and there is fluid inside.  He is "very concerned" about the mass of it and it's important that we have a follow up MRI in six months. 

We need to see if it is growing.  And if it is then it's a tumor and we'll need to have it surgically removed.

Heart drops from chest, blood leaves face, room starts spinning, eyes begin watering and I am completely and utterly dumbfounded.

Did he say tumor?  Are we seriously talking about brain surgery again?  Very concerned?  What is happening?

Don't cry, don't cry, don't front of 12 strangers staring at you while your being delivered unexpected and down right crappy news.

Pull yourself together.  Immediately.

I was able to get out only two questions.

How big should it be?  About half the size it is. 

Do we have anything to compare it to?  A CT scan from Sept. of 2011.  But the image quality is extremely poor and while he can't see the gland on it the radiologist reports that he can and that it was 5.8 mm at that point.  But don't even take that into consideration because we can't really be sure that's it or that it's properly measured.  We need the MRI in six months so we can compare apples to apples.

And so here we are again.  Worrying ourselves sick over something we know nothing about, can't control ... and freaking brain surgery again!

I honestly had begun to feel like as we approach the fourth anniversary since Bryce's last shunt revision that brain surgery was a thing of our past.  I had started to let myself hope and imagine that his shunt would continue working and working well for years to come.  That he would be one of those kids the neurosurgeons tell tale of, the ones that go decades without anything but an annual check up.

Don't get too comfortable.

PTSD?  Me?  Maybe just a hint.