Monday, February 16, 2015

Dr. Spongebob

Billy’s journey from doctor’s office to ER to PICU frightened us, but it also confused us. At no point during those first hours did we contribute his symptoms to the Enterovirus D68. Nor did we believe paralysis was a concern. The ER doctor in Joplin suspected Guillain-Barre Syndrome or Transverse Myelitis (both also very scary diagnoses), and my personal concern was the possibility of Billy developing respiratory weakness. 

Therefore it came as a bit of a shock when the MRI results showed inflammation from the base of Billy’s spinal cord to his brain stem. The neurology Fellow, Dr. Goeden, informed us that there was no way of knowing at that point whether there was permanent nerve damage since nerve damage and inflammation look virtually the same on an MRI. 

So, that was scary.

Fortunately, a couple of the doctors at Children's Mercy, KC, helped talk us down off the ledge and offered reassurances about the treatments they prescribed.

One of the first docs we encountered when Billy arrived at the PICU was neurologist, Dr. Brian Aalbers. Wearing the protective gowns and masks recommended by the CDC while treating potentially infectious patients made it difficult for us to differentiate between the various health care professionals who frequented Billy’s room. However, one doctor stood out to us by wearing a four-inch rubber Spongebob figurine attached to his stethoscope.

Naturally, we referred to him as, “Dr. Spongebob”.

After viewing the results from Billy’s initial MRI, Dr. Spongebob met with us to interpret the scan. He explained that the MRI showed inflammation in the same area of the spinal cord that the polio virus attacks - but he was hesitant to call it “polio” since the term conjures feelings of anxiety and fear in parents. Instead, he and the infectious diseases physician, Dr. Mary Ann Jackson, preferred the term, “polio-like” (not that THAT was any better), in an effort to help alleviate some of our fears. But, let’s face it, this was unchartered territory for all of us. So, instead of dwelling on the unknown variable of the situation I simply asked, “Well, if this WAS polio, what would you do? Surely in this day and age you would know how to treat a patient who walked through the door with polio, right?”

“Absolutely,” Dr. Spongebob answered. And then he proceeded to explain their plan of treatment, based on the hypothetical situation of a patient admitted for polio in the year 2014. It was a pretty aggressive treatment plan, but one we agreed with.

“Giddy-up,” we told them.

After meeting with Dr. Spongebob and Dr. Jackson, Charlie and I conferred with Dr. Thompson, the PICU physician. “If this was your son, what would you do?” we asked.

Without hesitation she answered, “I would push for plasmapheresis. In fact, that’s what I’m pushing for with Billy. The sooner the better.”

Plasmapheresis, while not necessarily a dangerous procedure, sounds scary. Especially to someone like me, who, even as I write this, blanches at the very discussion of anything involving blood, especially the washing of it. That just can’t be natural, right? 

Plasmapheresis is the process of removing ALL OF A PATIENT’S BLOOD, separating the plasma from the blood cells, and then replacing the wonky-acting antibodies in the plasma with albumin in an effort to get those antibodies to behave properly. While the procedure has been widely used in Europe and Japan, it has only recently gained wider use in the U.S., and has shown promise in treating those experiencing autoimmune disorders.

Billy was definitely a candidate for the procedure.

Dr. Thompson worked her magic and brought in Dr. Doug Myers, AKA “Dr. Vampire”, to explain plasmapheresis to us.  Somehow I managed not to faint during any part of the discussion. 

*This is important to note as I personally feel it is my one major contribution to the entire four month ordeal.* 

Over the next ten days Billy underwent plasmapheresis every other day, while also continuing to receive IV steroids. At the end of the ten day period, a follow-up MRI was ordered.
Those tubes are sucking out Billy's blood, people.

The repeat MRI was clear.

Doctors rejoiced. We rejoiced. All breathed a sigh of relief. Billy was moved to the inpatient rehabilitation floor and put to work.

It’s been a long road, with a long way remaining on this journey, but Billy is headed toward recovery.


And we continue to be thankful. Thankful for quick-thinking, rational physicians, thankful for healthcare professionals who offered us reassurances, and thankful for our friends who, at Billy’s initial onset of symptoms, set aside their own egos in favor of getting Billy the very best care possible. Their timely assessments helped make Billy’s situation much more manageable than it might otherwise have been.

3 comments:

  1. Natalie Gwen Maples-IngramFebruary 18, 2015 at 1:46 AM

    That is just unbelievable what he has gone through. Go Billy!

    Good piece Dawn.

    Thanks for sharing,

    Gwen Maples

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  2. Thanks for reading, Gwen! He amazes me each day with his determination and positive attitude :-)

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  3. Tell me about it, Tina. I once drew the line at cleaning up vomit! Somehow, though, I have super powers when it comes to dealing with my kids' injuries, and this was no exception. Both Charlie and I laughed at the end of the doctor's description of plasmapheresis and we realized that I was still sitting upright. Which is a good example of how humor helped us through this whole ordeal.
    Thanks for reading!

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