Sunday, October 12, 2014

A Call No Parent Wants to Get.

There's been something going on around here for the past two months, and after reading this post by a fellow Austin blogger, I felt similarly inspired to unburden myself and share our story. Here goes.

Back in mid-August, Ava had a bad fall. She was messing around on one of the barstools downstairs, and despite my husband telling her numerous times to stop, she was going around and around and, having distributed her weight funny, flipped the barstool over, both landing on her back/head, and the barstool landing on her and hitting her in the eye. It was by far the first time she'd ever been in that type of serious pain, and though we were extremely concerned and knew she'd have quite the shiner from, we didn't realize the ordeal that event set into motion.

The next day, Ava woke up with her eye practically swollen shut, and so off to the doctor we went. After x-ray's of her skull proved "inconclusive", they ordered a CT scan to check for facial fractures - specifically the eye socket and cheekbone. We got a call the next day - we had the scan at 5:30 on a Friday - from our doctor, and though she had good news (they didn't find a break), she then said words that took my breath away: "They did happen to notice something else..."

In the grand scheme of things, what they noticed wasn't that big of a deal. It wasn't a mass or lesion of any sort, which of course was the first place that my mind went when she said those words. What they had found was a Chiari Type 1 Malformation - a congenital malformation where a part of the cerebellum is not contained in the skull, but rather descends down slightly into the base of the skull, and in some instances, involves the brain stem or spine. Though of the four types of Chiari malformations, Type 1 is the only potentially benign, which was great news, but the things that Dr. Google immediately brought up was...intense. Like, lost days worth of sleep over the past few weeks from waking up in the middle of the night in fear of what the future could hold. Words like "brain surgery" and "paralysis" had me literally sweating, despite knowing that Google was not the best place to get information!

Our journey having only begun, we were then referred out to a pediatric neurosurgeon, making this mama all the more anxious. NeuroSURGEON? Not just a plain neurologist? I was increasingly scared, despite reassurances that since our appointment was scheduled for five weeks out, we needn't be too concerned, especially when the receptionist told me to "go to the nearest ER if you notice anything out of the usual."

Reading about Chiari wasn't exactly comforting either. It cited the potential to worsen throughout the course of one's life, with the only recourse for symptoms - which could include a lack of balance, headaches, neck pain, etc - a very invasive surgery that requires the removal of both part of the skull and part of the spine to decompress spinal tissue. In fact, in talking about this now, it is becoming increasingly clear why I was unable to mention it before we had her results. It all sounds truly terrifying!

When the day of her appointment finally arrived, we saw a fantastic doctor at Dell Children's - a resource in town I am both uncomfortably familiar with and beyond grateful for. After a screening that included a multitude of cognitive questions, physical skills and behavioral questions, the doctor seemed quite impressed with her capabilities. She reviewed Ava's CT, which showed a mild Chiari 1 malformation, and eased my concerns about where this came from, and how it wasn't due to anything I did during my pregnancy with Ava (she was a surprise, so naturally my head went to that couple of glasses of wine I had at a wedding before we found out I was pregnant!). In fact, the only concerning thing that went on at the appointment was that she immediately pointed out a break in Ava's cheekbone - something the doctor who read the CT claimed wasn't there. That might have been nice to know.....

Though the doctor seemed confident that she wouldn't require surgery for it in her lifetime, she ordered an MRI to take some further measurements,  to check for the presence of a mass that could potentially be causing the cerebellum to descend, and to check the flow of CSF (cerebral spinal fluid) in her brain. This was nerve-wracking for two reason: first for the potential for them finding something nefarious, and also because they typically require sedation for pediatric patients getting MRIs. While I'm not against sedation as a whole - I think it's fantastic for many, many things - I was against the idea of admitting her to the hospital and sedating her through an IV for a procedure that I felt she could do fine with without sedation. Knowing that if anyone was going to advocate for her it was going to need to be me, I stepped up to the plate and spent quite some time negotiating with her neurosurgeon's nurses, the radiologists and the CT tech to try to convince them to let us attempt the MRI without sedating her. I finally found some information regarding a program at a Boston-area children's hospital for the "try without" program, where they give parents the option to let their 4- to 6-year-old children try MRIs without sedation as it is proven to be less emotionally traumatic, and used that to leverage the same opportunity for Ava.

I kept the procedure under wraps until the day of - just a couple of days after our consult with the doctor - just because I knew she was the type of child that would be anxious about it, and given what ended up happening, I'm so glad I did. We showed up for our appointment at 4:45pm, with the procedure set for 5:30. She was very calm in the waiting room - probably because we had spent the day running around at gymnastics, kids club at the gym, the lake to feed the ducks, and the Children's Museum in an effort to exhaust and distract her - but around 5:40, mama started to feel less calm. Suddenly, we were called over and the receptionist explained to us that "the machine was broken" and we'd have to reschedule for another day. Uh, EXCUSE ME?! Was it not broken the past hour? I was so annoyed, and that was made far worse by the fact that Ava started crying because she "just wanted the pictures over with". Oy.

The receptionist then proceeded to shrug her shoulders at me until I thought I was going to be taken from the Children's Imaging Center in handcuffs, saying, "I don't know what else to tell you." She finally made a few calls and was able to reschedule our appointment for another center that night at 8 p.m. - sounds like fun for a four-year-old who was already overtired, and who was facing the difficult task of keeping completely still for half an hour. Super duper.

As annoyed as I was, though, the schedule change proved to work in our favor, since we got the world's best MRI tech at the other location, and by an act of God, many prayers from all of you, and the most incredible four-year-old I know, we sailed through the MRI and got the images needed without sedation!

Best of all, after a tense week of waiting for results to figure out the next step, we got the news a week later that her MRI looked great, and her CSF flow was wonderful! Such a blessing! Further, we don't have to return to the neurosurgeon for a year, and that will just be a visit to touch base - no imaging! She will need annual monitoring like that, and follow-up imaging to ensure her measurements stay the same from time to time, but for the first time in a long time, I slept well that night.

Thank you so much to everyone that sent prayers and love and hugs our way, and for the calls and texts that eased my mind and heart during those difficult two months. I appreciate it more than you know!

1 comment:

  1. So glad for the wonderful report! What a tremendous answer to prayers (including mine). And kudos to Ava because I am not able to take an MRI without sedation. In fact, I had to beg to be sedated after hysterically bawling for an hour in the tube. I am glad that you fought for what you knew was right for her.


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