Shunt and Ears

Touching noses with the pig that the MRI team gave Cayman.

Cayman's MRI scan yesterday showed definite improvement in her ventricle sizes!

That was the most relieving news to hear!

The scan gave us tangible, reassuring results that her shunt is not failing.

There is still a significant pocket of fluid accumulated around the shunt. While the doctor does not like to see that, he feels confident to say that the shunt is working well. Likely, the build up of fluid around the shunt is due to something called back pressure.

I'll try my best to explain. It took me a couple of rounds before I finally got it.

It is a type of pressure than can resist the flow of fluid within the shunt. During the last shunt surgery (5.10.10), the programmable shunt which had been set on 1.5 for over a year, was replaced with a fixed shunt at that same setting. However, it seems that there is a difference of pressure within her blood vessel (VA shunt) versus her belly (VP shunt). The setting that regulated the flow perfectly while it was in her blood vessel might be too weak of a setting for it to drain the fluid properly in her abdomen.

Since the pressure on her brain looks healthy though and has even improved since last week's scan, the doctor wants to wait to take action just yet.

This back pressure will do one of two things:

1.) It may improve and eventually balance itself out. By waiting to see if this happens would spare Cayman of another shunt surgery.

or

2.) It may just remain as it is. Not getting worse. Not getting any better. In which case the doctor would then schedule Cayman for surgery to change the shunt's valve setting.

Overall, I am relieved about this.

Her shunt is not failing.

Her brain is not under pressure.

That takes a lot of worry off my mind.

I slept more peacefully last night. It was the reassurance I have been hoping to hear and I praise my Jesus for receiving it!

That might sound a little off the rocker since we are potentially looking at another shunt surgery but the difference as to why I am at ease about this all has to do with the level of seriousness. The back pressure would cause Cayman to be scheduled for surgery.

'Scheduled' is quite a different kind of stress than an emergency surgery over a failed shunt.

I can handle a scheduled surgery over a shunt that is not getting worse but should be working a little better.

That, that I can handle!

What I don't ever want to "handle" again is another shunt failure like the last one.

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Checking out her ears with the toy otoscope.

Cayman also had her appointment with the Ears, Nose, and Throat (ENT) doctor yesterday.

We have been trying to get this appointment accomplished since April. It's been rescheduled for so many different reasons that kept coming up. It's also the appointment that we have been 'practicing' for with the toy otoscope at home.

At her last Audiologist appointment Cayman hated her ears being messed with. She had to be restrained and that brought her to tears of fear and frustration.

I hated seeing her like that.

So I bought her a toy doctor kit, specifically one with a otoscope in its collection.

And we played 'doctor'.

So on this appointment with the ENT, we took along that toy otoscope. I gave it to Cayman to hold while the doctor examed her ears.

She cooperated beautifully!

I wish you could have seen my smile. It stretched from ear to ear. It gave me such a good feeling to watch Cayman sit there unrestrained in that chair and calmly let the doctor look at her ears.

The toy otoscope idea was a success and my little Cayman braved what she once feared so greatly!

Today's Neurosurgeon Appointment

Where do I begin?

The overall report was not the reassuring, good news we were hoping for.

Cayman's ventricle sizes are not where they typically are when they are stable. And to add to the bad news, the amount of fluid accumulating around her shunt is increasing. Those are not very reassuring signs.

HOWEVER, Cayman's temperament is more like her typical self. Also, her shunt manually pumps and refills properly. Plus her belly is free of any fluid pockets giving us more peace that the scar tissue in her abdomen is not preventing the drainage. All of that is very reassuring.

So what this all really means is that it does not for certain point to a problem being present, nor does it rule it out either.

So we continue to hang in the balance, where there is two possibilities and it's impossible to predict which direction the scale will eventually tip.

So while we continue the watch and pray at home, we will also return to the Neurosurgeon next week for another MRI to compare the ventricle sizes again.

Ophthalmology Appointment

Cayman's latest eye appointment has turned up the need for her to wear prescription eye glasses.

We've been giggling over the thought of how cute she's going to look in them. And we've also been scratching our heads in the wonderment of how we are going to get her to keep them on.

Her previous appointment to the Ophthalmologist (and I cannot believe I just spelled that word correctly without the aid of spell check) was in December. Since then her vision has decreased in her right eye. As her brain uses it less and less to focus with it has begun to turn in, giving her what we most commonly know as a 'lazy eye' (amblyopia).

She has been very far sighted in both eyes.

Now her left eye is lessening in far sightedness while her right eye remains very far sighted. The difference in depth perception between the eyes is causing the decline in her right eye.

And there's an explanation why.

Here it is...

She has something called a myelinated nerve fiber layer in her left eye. It's the continuing of the insulation wrapping that is around all nerve fibers. Normally this wrapping stops at the place where the nerve enters the eye. In rare occasions, this insulation continues enveloping the nerve as it passes through the eye.

Puzzled by this, I asked the doctor, "It sounds like a bad thing, but her left eye is doing so well in vision, so is this is a good thing for that left eye?"

He said, "It depends on which angle you look at it."

This extra layer around the nerve fiber has lessened Cayman's far sightedness in that effected left eye. While that is actually a positive thing when considering only that individual eye, it's a negative thing in account that eyes should work in pairs though. Her right eye cannot focus as her body favors the stronger left eye's vision.

Since she cannot focus both eyes together the doctor wants to try glasses to see if that helps correct the depth perception and hopefully prevent vision loss in her right eye.

If there is no changes with the glasses we'll move onto patching.

If that doesn't work he'll start talking surgery.

I feel I'm getting a small degree in ophthalmology now too.

Next up on the education list is otolaryngology, the ear doctor. In a week we will return to their office to do further investigation as to why Cayman's tympanogram continues to come back abnormally.

By the end of this very long, two and a half hour eye doctor appointment yesterday, my tired, loaded mind was feeling overwhelmed. On the drive home everything was rolling through my brain...

The eye sight issues.

The possible hearing issues.

The gross and fine motor skill issues.

The thumb issues.

The speech issues.

The shunt issues.

The cardiac arrest issue.

But with just one glance in my rear view mirror, the image of my little, pink Cayman buckled in the backseat melted the consuming stress away.

Even on the days when it's not always so easy, I can always say it's so worth it! Most of it feels quite small in light of the fact that she is still with us. That alone makes life sweet just as it is!

You will not find me complaining.

Overwhelmed at times, maybe yes.

But not consumed or defeated.

I am grateful for each way God has given me all the order and disorder, so that I might know both. Somehow He perfectly allows the disorder just long enough for me to realize and wholly appreciate the light, the courage, and the joy of each day.

My heart remains full of praise to my Lord that has blessed me in ways I am still learning new each day!

Post-Surgical Follow-Up

Life (a.k.a. the last three weeks) with a VP shunt has been beautiful. We are completely warmed by the wonderful feeling that it is working for Cayman. I feel more at ease now. With a VA shunt I always carried in the back of my mind that someday Cayman would outgrow it - it would need to be replaced. Plus there's some icky risks to having it in a vessel surrounding the heart. It's so much better that it's in her belly now.

We returned to the Neurosurgeon's office last week for her post-op checkup.

She tipped the scale, weighing in at 22 pounds! That's HUGE! Not so much literally obviously as it is figuratively. I've written in the past about the eating struggles we go through with her. It felt like victory to see her finally push past the 20 pound mark!

I captured a few pictures of Cayman with her Neurosurgeon, the most wonderful doctor I can ever imagine. I wish I could introduce him to you all. I'm so proud to call him Cayman's Neurosurgeon. He is simply a wonderful man!




I never did get a great shot without Cayman's hands in front of her face. She just couldn't stop playing peek-a-boo and clapping.

What a sweetheart that kid is! So full of life!

And so are we!