Welcome to Marissa’s site. Please sign in to show your support.

Journal

March
31
2018

Spinal Fusion Surgery

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.

Help Marissa Stay Connected to Family and Friends

A $30 donation to CaringBridge powers a site like Marissa's for one month. Will you make a gift to ensure that this site stays online for them and for you?

Comments

  • Amanda Wigginton : Marissa is the most courageous young lady I've every had the privilege to meet. Let her know we are praying earnestly for her. {{hugs}} Much love my friend!
    4/3/18
  • Aimee Ferry : I can most certainly relate as far as her pain. I was 14 when I had to undergo spinal surgery for the same reason. I was born with scoliosis and it got to be got the point where I coulnt walk. I'm sorry your little one has to go through this pain! I've had 3 children and my back surgery was by far the worst pain! I hope everything goes well for your little girl. Huggs and kisses 😘😘
    4/3/18
  • Mandy Webster : Thank you for sharing this. I will continue to be praying. My heart hurts for you guys. Meals and babysitting seem so inadequate. Please let me know if I can do more. Love you guys.
    4/2/18
  • Carolyn Stewart : Wow I can only imagine how overwhelming that must feel. I can understand she doesn't feel brave enough in the face of that and yet to others we see such strength in her. We will be praying especially into all this and the recovery. Maybe you can post an address where she could receive mail, also a reminder if she has any food allergies? We love you guys and will stand with you in this.
    3/31/18
  • Megan Wolf : Many prayers will be sent up for Marissa and family! She is such a strong little girl and I am sure mom and dad are making the best decisions on her behalf. I know you guys have been walking a long difficult road and continue to do so. Please remember you all have friends near and far who care about you all and we are here no matter what. XOXO!
    3/31/18
  • carolyn teevin : Marissa, you are definitely courageous. You have already overcome many obstacles. I am so relieved that you have such a wonderful medical team, and remember that you KNOW the Great Physician . We will be praying for you!
    3/31/18
  • Danielle OToole : Oh Marissa! You have been dealing with pain and other realities in your life that many adults could not handle. You are not only courageous but you are strong. I wish you the best sweet girl. I will be thinking about you!
    3/31/18
  • Suzanne Crossley : I will be praying for her and for your family. Marissa is one of the most courageous people I have come across in life. She and her story really touched me at the RareKC event. She gives me strength on my bad days. Hang in there! Praying all goes well.
    3/31/18