CT Scans and X-Rays and Shunt Taps, Oh My!

Emma and I have had a busy couple weeks. On November 12th, she got a viral infection. She was extremely congested and coughed for nearly a week. She stayed home from school Thursday, Friday, and the following Monday, but her pediatrician cleared her to return to school Tuesday and she had been asking to go. After two days back at school, she began vomiting after I put her in bed for the night on Wednesday. After the first time, we got her bathed and all cleaned up. Then came a second wave around 9:30 PM, followed by a call to her pediatric neurosurgeon. Given her last week of fighting off the viral infection, he said to watch her and see if any other symptoms developed. She had no fever and her open soft spot on the back of her skull was not full of fluid. But for some reason, I was still very uncomfortable. I didn't get the sense that her shunt was failing, but since she has been lucky so far and not had a malfunction, we don't know what cocktail of symptoms she will have. When the third wave came and she struggled to purge her already empty stomach, we packed her bag and headed to the Emergency Room (ER) at Children's Hospital.

On the ride there, she had a fourth wave. We finally arrived at the hospital and found the ER entrance. We lucked out as the first parking spot in the parking garage on the ground floor was empty. Once parked, I stripped her down out of the clothes she had on that got messy in the ride there and rushed her inside. Thankfully, I had called ahead and they had put her on a priority list. When we checked in, we were directed to another waiting area. While in that room, she vomited another four times while we waited to see a doctor. It felt like an eternity to me, so I can't imagine what it felt like for her.

When we made it to a room, Emma had to endure test after test after test. They took blood and fitted her with an IV so they could give her medication to stop her nausea. Then came the urine test, but sadly the sample had to be taken using a catheter. Once those were done, next were the orders for the big tests: CT scan, shunt series (7 x-rays), and a shunt tap.

The CT scan and x-rays didn't worry me other than the amount of radiation she would be exposed to. One shunt series is roughly equivalent to one year of natural radiation. I asked that the CT scan be done using a gantry angle in hopes of avoiding any exposure of her eyes and thyroid to more radiation, but was told their machines couldn't do them at an angle. After reviewing everything, the pediatric neurosurgeon said everything looked normal. The shunt tap was next and that procedure did make me nervous. It was her first time to have one and I knew it could be painful. The pediatric neurosurgeon was very kind and great at explaining everything she was doing. They put a numbing cream on Emma's scalp where her shunt was to try to minimize her discomfort. Then came the time to be brave. I held her head still so she wouldn't move when the pediatric neurosurgeon performed the shunt tap. A nurse held down her arms and legs. She was so strong and brave- I was so proud I was tearing up. The pressure was between 4.5-5 and the cerebrospinal fluid (CSF) was crystal clear just as it should be. Visually, there seemed to be no issues with her shunt. To be sure, they took a sample of CSF to be sent off to be tested. 

At that point, we were told, as long as she could drink something and keep it down, we could go home. Here came a completely different set of challenges. Emma is picky when it comes to the liquids she will willingly consume. She loves milk and will also drink watered down juice- but not straight water or juice. She is also picky as to which delivery systems she will happily utilize. This posed a challenge given the cafeteria was closed and the nurse had limited resources. She found some apple juice and used pedialyte to water it down. But the bottle was not the one Emma was used to so she resisted. After the night she had just endured, I can't blame her. Thankfully, after struggling with the juice for around 20 minutes and barely having an ounce, the nurse found milk on the seventh floor. Hallelujah! Once she had three ounces of milk down, the nurse said we could go. We packed up her dirty clothes, got the discharge paperwork, and headed home. We got home just in time for her epilepsy medication. I offered her some milk and she crashed in my lap.

It was a long night for both of us, but I was so proud of her for doing so well despite everything she was going through. I took about an hour nap and worked from home that day so that I could be near and keep an eye on her. I knew it would be a rough day for her getting back to her normal schedule as best she could after being up all night getting tests done at the ER, but she's a fighter. She vomited one more time around 4:30 that afternoon, so I stayed up all night Thursday to make sure everything was alright. Work Friday was a blur, but thankfully she did well all day. We had a follow up appointment with her pediatrician around lunchtime where we were given directions on how to slowly reintroduce her normal diet into her routine after going through everything. She confirmed there was a nasty viral infection going around in our area that was causing the same symptoms Emma had presented with Wednesday night. Emma's system was just already weakened by the other viral infection she had been fighting for a week that this one hit her pretty hard.

I'm extremely grateful that this wasn't her first shunt malfunction, but I know her luck will likely not last forever. We will have several nights like that night where she will show just how strong she is as she gracefully looks hydrocephalus in the eye and says, "I got this, Mommy!"