We had just come from a wonderful, yet bittersweet, Spring Break with my family. My mom took us all on a one week Caribbean cruise to honor and celebrate the life of my step dad who passed away unexpectedly (and traumatically) exactly 6 months earlier. We had all gone on our first cruise together last Spring Break, so my mom wanted to take us this year, to not only be together during that difficult milestone for her (and us) but also to help her get back into traveling without him.
Three days after we got home – April 4 – my oldest son Brian (who is a freshman in high school) came home from school and told me he had been getting sick all day at school. Why he didn’t go to the nurse is beyond me. He claims she would have just sent him back to class. Whatever. The vomiting went on for 48 hours. We assumed it was the stomach flu. After three days of eating nothing, he tried some bland foods, which stayed down. But only for two hours. This went on for several days. This was no longer the stomach flu.
I took him to the doctor. Couldn’t get into his normal doctor – saw whoever I could get into see – Dr. Neville ended up being WONDERFUL. But he was just as stumped. He ordered a full blood panel, a stool sample (that took a while to get since he wasn’t eating), and an x-ray of his stomach. Everything came back normal. Next step was to see a GI for an upper endoscopy.
Since Brian was keeping liquids down (thank goodness) Dr. Neville suggested he start drinking protein shakes to get some nutrition in him. He lived off protein shakes for the next 5 weeks. But unfortunately that wasn’t giving him quite the same amount of energy that real food would give him and he slept most of every day single away.
The GI doctor performed the upper endoscopy and took some biopsies. He was convinced it was going to be gastroparesis (A condition that affects the stomach muscles and prevents proper stomach emptying causing you to vomit undigested food eaten a few hours earlier). However – again all the biospies came back normal and his intestines looked great. He too was stumped.
It had now been three weeks since we got home from Spring Break. We were desperate for answers. I took Brian to our Chiropractor to try acupuncture. Heck, it was worth a try. Not sure if it helped his digestive track, but he got a good nap and it certainly didn’t make him feel any worse.
Knowing that Brian was no better and unfortunately the GI doctor had no answers for us, we went back to Dr. Neville to help us. He order an ultrasound of his stomach and an X-ray with contrast. All of those came back negative. He then suggested we try an MRI of his brain to see if anything neurological is going on that would be making him sick.
Thank God for Dr. Neville. He called me two days after the MRI and told me he had a large arachnoid cyst in his brain. Nearly 6 centimeters in size, this benign cyst was filled with spinal fluid and was not draining on a daily basis like it should be. Who knows how long it had been there, but it needs to be taken care of ASAP.
He gave us the number to a Neurosurgeon at Lurie Children’s Hospital of Chicago – who ended up being Dr. Tomita – the head of Neurosurgery. We were able to get an appointment 4 days later to see him. He explained to us that Brian has probably had this cyst his entire life. The concussion he got playing soccer back in February may have aggravated it, but not likely. He probably just started getting symptoms because of his growth and adolescence. He also told us everyone has spinal fluid in the middle of their brain like where Brian had it, but it drains on a regular basis. Brian’s wasn’t draining because it was clogged. So they needed to do surgery to unclog it so that the fluid could start to drain.
They were going to drill a hole in to my son’s head. “This is a routine procedure that we do everyday here at Lurie’s,” Dr. Tomita said. “I’ve done thousands of these routine procedures.”
I don’t care. You are going to drill a hole into my son’s head. I could not get past that fact.
It was now May 1. We scheduled surgery for May 14. My son had not been to school since April 4. Overall, the school and teachers were great. He ended up not returning to school at all for the rest of the school year. He had to do a few things things to finish up the year before surgery and has to retake one class over the summer (one teacher just couldn’t let it go).
May 14th finally came. We were more nervous than him. He was gone for about 3 hours. He did great. He had a rough time with the anesthesia after surgery – that nauseousness lasted several hours. But by late evening he was eating cheerios, then some crackers and a bagel. He was walking to the bathroom on his own and by the next morning eating oatmeal.
31 hours later he was released and went home! Amazing! The hardest part? He had to be on “bed rest” for 2 weeks. He couldn’t do anything that would raise his blood
pressure – so calm activities. Which meant no video games. And no video games for a teenager is like torture. But he survived. He slowly got his appetite back and today he’s eating like a champion again. His nauseousness is gone and the surgery was 100% worth it. I wish we could have learned what it was 6 weeks earlier…but who would have thought? You’ve got to do process of elimination. Can’t just jump into a brain MRI.
The human body is amazing. I’m just so glad Dr. Neville was on my side. He would call me personally to discuss Brian’s case and was supportive of my motherly instincts when I would say “this is not normal”, “something’s going on”. A mother knows her kid and knows when they are faking a sickness, when they are stressed, not wanting to go to school, etc.
I’m so glad I stuck with my gut and have my happy, video game playing, soccer loving, happy son back!
Although he cannot yet get on the soccer field, he can workout, build up his endurance and start contact sports again in August.
They want to give his body a full 3 months to heal. They will do another MRI in early August to make sure the progress is still good and give him the all clear.
He’s itching to get back on that soccer field and when he does I’ll be cringing at every single header he makes for the rest of his life. But the fact that he’s out there doing what he loves make it a beautiful day!
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