On December 15th, Rhana Serene Fleming was running her warm ups in gymnastics when she started feeling her arms grow heavy. Within 4 hours her diaphram stopped working, she stopped breathing on her own and her arms and legs were unable to move.
This is the beginning of her journey.
We don't have a diagnosis yet. The doctors are describing her situation as Transverse Myelitis.
"Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body"
As it stands she is undergoing PlasmaPheresis
"The basic procedure consists of removal of blood, separation of blood cells from plasma, and return of these blood cells to the body's circulation, diluted with fresh plasma or a substitute. Because of concerns over viral infection and allergic reaction, fresh plasma is not routinely used. Instead, the most common substitute is saline solution with sterilized human albumin protein. During the course of a single session, two to three liters of plasma is removed and replaced."
She is also being hit with 1G of Steroids a day.
She has had 4, 3 1/2 hour MRI's, all showing swelling and inflamation of her spine. .
She has had 2 spinal taps.
We still do not know what caused this reaction in her body. We may never know.
She's gaining the attention of Neurologists and the CDC and the international medical community due to a few factors:
1. Her age. She is 12 years old. Myelitis usually affects older people with various immune issues.
2. Her good health. She is an athlete that takes her nutrition and exercise very seriously. She did NOT have an immunization or a flu vaccination prior to the episode.
3. The speed in which she deteriorated. She went from A to Z in hours.
4. Her Spine. Normally with similar conditions only parts of the spine are affected. Her entire spine is swollen. C1 to L5.
5. she did not respond to aggressive treatment
Her case is so rare they have no medical papers from which to pull information from. There are similar cases but none like hers. Doctors are currently writing about her case from all over the world.
We do not know the extent of her damage. We will not know until the swelling goes down.
Will she breathe on her own again? We do not know. Will she be able to move again? We do not know. We know we have a long road ahead of us. We hold faith that she will be back in the gym. She makes progress every day and every moment is celebrated!
As she said on day 10, Christmas Day 2012, "I did not become a gymnast overnight, it took a lot of hard work. I'm not afraid of hard work, Mom."
Update December 28th, 2012
Today is Rhana's last Plasmapheresis treatment. She asked the nurses if she could keep some of her plasma. She wants to do a video report for her Science class.
After this treatment we will begin her IVIG (an antibody treatment)
December 29th, 2012
RHANA MOVED LAST NIGHT!!!!! SHE MOVED HER RIGHT FOOT!!!!
The whole ICU Cheered! I sob as I write this.
Dear Lord, I drop to my knees!
She's resting today, when she's quiet and staring at the ceiling I worry she's pulling away but she was using her energy to concentrate! Tears of joy are flowing all around! We have a ways to go but this is a huge step! It means her spine is getting signals all the way to her toes :)
Sorry I haven't updated in a day. We've been busy! Rhana was able to kick the Physical Therapists hand away with her right foot. Her range of motion is phenominal. Her left foot needs a bit more work but her muscles are engaging! Tomorrow they are going to attempt some breathing trials. She's getting impatient with the progress, that it's not moving fast enough, but she's using that momentum to push forward. It is awesome to watch her hard work and dedication. Her strength is awe inspiring.
Her family, PT team, doctors, friends and even strangers are all rooting for her. She is a rock star.
Thursday we trade out her temporary trache tube for a new one. Then we move on to swallow tests which I don't think will be an issue, she's been swallowing this whole time. That coca cola is getting closer, baby!
Oh! Her shoulders are shrugging more and more every day. Today has indeed been a great day!
Thank you to all of you who are taking the time to follow her progress. Your words of encouragement mean the world to her. We read them every night and regardless of her mood they put a smile on her face. THANK YOU!
Today is January 2nd, 2013
She had a therapy dog come and sit on her bed with her. I think I'm going to get our dog's nails clipped and bring her in. She is a Chihuahua named "T". Rhana smiled and said she needs to take some serious classes first as she can be quite hyper and loves to lick nostrils!
We continue with physical therapy and OT. She's getting stronger everyday. I think PT is the key as she feels like she's doing something, moving forward. We're looking forward to rehab. The sooner we get there, the sooner we can bring her home. The day we bring her home will be the happiest day of my life.
Tomorrow she gets her first trache change(the breathing tube in her throat). This is exciting because it means she is mobile. Tomorrow we can start her swallowing tests.She changed her mind from a Coca Cola to lemonaid. I don't blame her, lemonaid is my favorite too.
The fabulous people at Children's Hasbro have given us the vet info to bring T in! T is Rhana's Chihuahua. I know that seeing T will bring her great joy. I think I'm going to make it a surprise. I know T misses her terribly and will be very excited to lick her face! hehe Get ready Rhana! T's got a lot of pent up love to give! :)
Today our dog Titty (yes our dog's name is Titty) was able to visit. I was nervous because T is an anxious dog with a tendancy towards the high strung. She approached Rhana with such gingerness and care. She stopped and checked out her ventilator before giving her the most tender of kisses. She then went to town licking her hands and arms and fell fast asleep.
You can see the video here:
Titty the therapy dog? Who knew. Might have to change the spelling of her name to Tiddy though, just for formal records ;)
We were informed that in order for her to do her swallow test she'd have to be sitting up. The last time she was sat up her heartrate took a scary dive. She asked to be raised up immediately. They raised her bed a little at a time. They stopped at 40. She asked to go to 50. All the while in level 10 unimaginable excruciating pain. She is determined. She asked what angle "wheelchair" ready was.
Today is January 6th. We've been here 22 days. Her right leg gets stronger every day. She's also shrugging her shoulders really well. I watch her at night. Flexing and testing. Trying and visualizing. She can point her right toe and lift it back. She does this even in her sleep.
She was put on her mobile ventilator today. It was uncomfortable. They wanted her to manage at least 10 minutes, she went for 30. She knows this portable vent is her ticket out of here and she can't wait.
When we first came in anything cold on her hands and arms burned like fire. Ice cubes burned her. Today she asked me to put an ice cube on her hand and it didn't burn. she said it was warm. Progress :)
She's in the pink chair! She's sitting up :) They deflated the cuff (balloon filled with water) in her trachea a bit and she's able to make sound! Her first words, "I sound like a monster, think I can get a job on the simpsons?" ha! She's having a great day! We're still not sure what time the swallow test is but the nurse said that seeing as she's in the pink chair with wheels... and can tolerate the mobile ventilator....let's go for a spin?! yay!
The swallow test was a huge success! She was able to drink fruit punch and eat a whole container of chocolate pudding! Best. Pudding. EVER!
Today we're dressing in warm clothes. She wants to go outside and feel the air. Off to walmart I go to find some warm woolies!
January 13th - Rhana is able to eat real food now. She is eating pizza, spicy chicken from 99, and all the things she loves. I make red velvet and cookie runs at least twice a day!
Liquids have to still be thick, and we use a powder to make them thicker. It's called "Thick eez" and the only thing she can enjoy with it is cranberry juice. The milk, eh, not so much :)
She also has been on a "tilt table" where she is strapped to a board so she can "stand up" - she kept saying "higher, higher" which nearly gave me a heart attack. She joked that she was as tall as her daddy now :)
We have a new room in the ICU at the hospital and it is a bit nicer. There is more room and she can keep an eye on the nurses.
The pain is still the main issue and the doctors are working on that as a priority. There is little improvement in her movements but the movements she does have are getting stronger everyday.
This recovery will take time and hard work on her part.
With regards to the pain I think we're getting a handle on it *crosses fingers* She can focus on her recovery instead of the pain now...and red velvet cupcakes ;)
A few days ago she was in the pink chair and sprung from her room. When asked where she wanted to go she asked to go to the gift shop. The nurses asked what she wanted to buy she said she wanted to, "get a stuffed animal for all of the other kids in PICU" We bought 8 and delivered them.