A Grace-full Monday

Saturday night, Grace woke up with a 103 degree fever. I gave her some ibuprofen and rocked her back to sleep hoping it would all be gone in the morning. The next day she still had her fever, was lethargic and irritable. With all of the germs the kids bring home from school, I knew it was probably just a virus. But I also knew that these were the signs of a shunt malfunction.

 After a visit to our pediatrician didn't find anything major, we were advised by our neurosurgeon's office to go to the emergency room. A CT scan didn't find anything wrong with her shunt, but her neurosurgeon admitted her for observation.

To make a very long story short, we spend the night at the hospital. Grace got fluids, antibiotics and lots of rest.

It turns out she was hospitalized for just an ear infection. I felt so silly when they determined that there wasn't anything serious wrong. But from the very beginning of her life, I promised myself that if that tiny voice says, "It could be her shunt", then I will listen to that voice. An ear infection can be cured with a simple antibiotic. Shunt malfunction can mean major surgery.

I'm so thankful it was nothing serious this time!

What Gracie Sees

Looking up is something new for Grace. Because of the pressure of the extra fluid in her brain and her low vision, she normally keeps her eyes downcast. Seeing her look up makes my heart sing.

Grace recently had her follow up with the opthamologist. We still don't know how much she can see, but the nystagmus (eye's shaking) and strabismus (eye crossing) is getting better. He asked if I think she is seeing better and I wasn't sure how to answer that. Sometimes I feel like she can absolutely see. Other times she won't look at something that's right in front of her. She seems to see better with her peripheral vision and when it's especially well lit, but tends to hold toys very close to her face often.

Grace looking at her ring. It's hard to know if she does this because she can see them better
this close or if this is just a quirk. She does this frequently.

So many things about Gracie's condition are "wait and see". Will she be able to see normally? Will she need to learn braille? Will she be able to attend school without special assistance? Will she run into things a lot when she starts crawling/walking? There is no guidebook on what to do when your child is visually impaired. No "What To Expect - The First Year with your VI Baby".

Maybe I should start writing one...

Hydro 101 - Causes and Cures and Treatments, OH MY!

In Gracie's case, we know why she developed hydrocephalus. She suffered a severe brain bleed in utero and a blood clot from the bleed prevented the CSF from draining properly. Unfortunately, we have no idea what caused the brain bleed.

 Some cases of hydrocephalus are caused by infection, some by trauma, but in many cases there is no known cause. Most cases (about 70%) are congenital, which means it is diagnosed before or shortly after birth.

There is no cure for hydrocephalus. There is no pill, exercise or magic wand to wave and make it all go away (trust me, I've prayed for one of those!) The only treatment for hydrocephalus is surgical - a shunt is surgically placed in the brain to help drain the fluid. There are three parts to a shunt - the catheter, the valve and the distal end. The catheter is a narrow tube enters the ventricle of the brain. The valve is usually placed outside of the skull (under the skin) and behind the ear. It's job is to control how much fluid is drawn from the brain. The distal end is a long tube that goes down the neck and into the area where the excess fluid will be absorbed.

Grace has an adjustable VP shunt. Since it's adjustable, her doctor can increase or decrease the flow with a magnet instead of having to do surgery. (It's a special, heavy duty magnet - fridge magnets won't affect it at all.) The "VP" refers to the part of the body where the excess fluid is drained. Gracie's distal end of her shunt leads into her abdomen, but in rare cases it can also be fed into the lungs or heart. Grace has a small scar on her belly where they had to adjust the placement of the tubing during her first surgery. If you feel above the scar, you can actually feel the tubing! You can also sometimes see the tubing in her neck if she turns just right, although that is getting harder now that she's getting chunkier.

The really bad thing about shunts is that they are not permanent. They can last 5 minutes or 50 years. In our case, Grace's first shunt lasted 7 months before it had to be replaced. Hopefully her new shunt lasts much, much longer.

Since there is no cure for hydrocephalus, Grace will need her shunt for the rest of her life. This treatment isn't just a one time thing - it's a constant, daily issue of watching for signs of malfunction. It's unexpected hospital stays. The possibility of major surgery looming over her sweet head regularly. Fear of her being hit in the head accidentally.

Grace had her shunt replaced in April and we are just now on the verge of getting the flow right. She's had 19 CT scans in her short life. The radiology department is on a first name basis with us and I have her neurosurgeon on speed dial.

I hate this for my daughter. I don't want this for the rest of her life. But these are the cards that we - and so many other families - have been dealt. I pray daily that they find a cure at some point in her lifetime.

Hydro 101 - What is Hydrocephalus?

It has been almost a year since we were thrown into this whirlwind of having a child with hydrocephalus. I've certainly learned a lot and have found that there is a lot of confusion and misconceptions about the condition. Many people really have no idea what hydrocephalus really is. Let the Mighty B break it down for you a bit. :)

Hydrocephalus is the medical term for the condition commonly referred to as "water on the brain". The 'water' is cerebrospinal fluid (or CSF) and is produced in our brain, travels down and back up our spine, then coats the brain to nourish, cleanse, and protect it. CSF is then absorbed into our blood system and discarded by our body. In most cases with hydrocephalus, there is a blockage preventing the CSF from going on it's merry way. The CSF then backs up, enlarges the cavities in the brain (known as ventricles) and causes loads of problems.

I recently explained it to Riley in terms I knew he'd understand. Our brains are like sinks with the faucets constantly flowing. Gracie's sink got clogged and the water couldn't drain down properly. Dr. Yount (her neurosurgeon) is like Mario. He put new pipes in her brain to help drain the water.

So what causes hydrocephalus? Is there a cure? How is it treated? How does it affect the rest of the body? Stay tuned to learn more!