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Apr 18-24

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On April 3, 2018 Marissa will be undergoing posterior spinal fusion surgery.  This surgery will correct her worsening scoliosis, which is a result of nerve breakdown caused by Friedreich's Ataxia.  Yes; it is a necessary surgery.  No; there is not a less invasive option. Marissa's brain is unable to get the message to her spine to tell it to remain upright. The pathway for messages is broken and cannot be fixed.  Without surgery her spine will continue to curve.  Other surgeries are not an option because of the progressive nature of this scoliosis.

Marissa has been in a great deal of pain for the last year. This has greatly decreased her quality of life.  We have mixed emotions about this surgery.  We know Marissa has a shortened life span, and we want to do everything we can to give her the best quality of life possible.  The surgeon believes this surgery will greatly reduce, if not eliminate the pain she is having.  This is wonderful news.  However, the surgery is going to be extremely difficult for Marissa.  She will be having two steel rods placed, one on each side of her spine. These will be screwed in in several places.  Donor bone will be grafted . Everything will be wrapped (fused) in metal.  Our surgeon uses an example of chocolate chips.  If you place a pretzel on a plate and heat chocolate chips in the microwave, you can pour the chocolate over the pretzel. After cooling the pretzel will be covered in solid chocolate. This is similar to the way her spine will be covered.

The recovery will be very long and intense.  The surgeon believes she will begin to feel "normal" in about 5 weeks, but says she must be treated as a princess for 6 months.  Though the end result will be a straighter back and less pain, though the surgery is necessary, the procedure and recovery are also scary.

Marissa will be well cared for at University of Iowa Children's.  Her medical team includes a cardiologist (she has hypertrophic cardiomyopathy); pulmonologist (nerve damage as made her lungs weak in strength); and neurologist (specialized in neuromuscular disease) in addition to her orthopedic surgeon.  We've met with each provider and they will be near during the surgery and recovery.  I cannot say enough wonderful things about our medical team.  They work as a team; they communicate as a team; they treat us as valuable members of the team.  They are skilled as well as compassionate.  I trust them implicitly. 

As much as we trust the medical team, there are risks involved, especially with a child this medically complex.  Please keep us in your prayers in the days leading up to, during the surgery, and during recovery.  Surgery is currently scheduled for April 3 at 1145am.  

Our immediate prayer need is for Marissa's spirits. She is understandably scared.  She has stated, "I'm trying so hard to be courageous, but everyone should know by now that I am not a courageous person."  I disagree.  Being courageous does not meet an absence of fear; it is pressing onward through fear.  Marissa has demonstrated tremendous courage in the past year since her diagnosis of Friedreich's Ataxia.

Thank you for stopping by.  I will do my best to keep the site updated as things unfold.

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