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Love & Prayers for Indigo Rose

$40,679 of $50,000 goal

Raised by 479 people in 1 month
Created May 13, 2018
Three weeks ago, our family got the kind of phone call that everyone dreads. My three-year-old niece was being rushed to the hospital by ambulance. She had suddenly lost control of the entire right side of her body and could not stand on her own.

While my terrified sister and brother-in-law, Megan and Rob, rushed with Indigo Rose to the hospital, the rest of us paced by the phone, anxious for news. Indigo had always been healthy, so we were hopeful that nothing could be seriously wrong.

When Megan called, however, the news was bad. Indigo had had a stroke, and the doctors didn't know why. For days, she had to undergo test after test, from bloodwork to EEGs to MRIs and MRAs. She had another stroke two days later, where she was paralyzed on one side of her body again. She had to have so many tests that the doctors had to insert a PICC line that goes from the veins in her arm to her heart to make blood draws and medicine easier to administer.

After a few more days, the doctors had some answers for us. They diagnosed Indigo with Moyamoya, which is a rare, progressive cerebrovascular disorder. She is at Stage 4, whereas other children diagnosed at her age are generally Stage 1 or 2. Moyamoya causes the  arteries at the base of her brain grow narrower and narrower over time, leading to strokes, muscular weakness, seizures, and, without medical intervention, death.

The pediatric neurosurgeons at UCLA recommended bilateral revascularization surgery, which bypasses her blocked arteries,  as the only way to  save Indigo's life.

Last week, Indigo underwent the surgery. While the plan was to work on both sides of her brain, the neurosurgeons realized mid-surgery that Indigo's brain was hemorrhaging, and so she was too weak to have the operation on both sides. They spent 6 hours working on the left side of her brain, and they will have to repeat the surgery on the right side of her brain in another 6 months. She woke up from the surgery in extreme pain, and her little face was swollen and bruised.

Although the surgery was nerve-wracking for everyone, especially Megan and Rob, we thought that maybe the worst was over. It wasn't. During the night after the surgery, Indigo suffered another stroke. The following night, she started having seizures, one of which lasted more than three hours. That seizure caused Indigo to again lose all her mobility, and also took away her ability to speak.

From the time this nightmare began until today, Indigo has had 5 strokes, and 16 seizures.

She can't move or talk the way she used to,  and she is scared and bewildered by what is happening to her. She suffers from night terrors, hallucinations from her anti-seizure medications, vomiting, and overwhelming exhaustion. Her little body has been through so much. Megan and Rob cannot bear to leave her side. They are in agony watching their little one suffer as she is. Her life is hanging in the balance.

Indigo has been hospitalized in the ICU for nearly a month now.  As a result of this medical catastrophe, their medical bills are piling up. Current estimates put Indigo's medical bills in the hundreds of thousands of dollars. They need as much help as they can get to help Indigo get well enough to go home, and then to return to the ICU for the second half of her surgery. This beautiful, strong, sweet little girl has been through so much, and she is fighting so hard to live and thrive. Please help as much as you can.
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For the past month, Indigo has been resting and recuperating at home. Her brain surgery scar is healing beautifully. The good news is that she finally passed her swallow test, and she's cleared to take baths and swim. Her surgery follow-up was a success.

She does seem to be experiencing Post-Traumatic Stress Disorder during her doctor and hospital visits, which is really hard for Megan and Rob to watch. The doctors aren't sure how long she'll be affected by PTSD, but currently Indigo is terrified whenever she sees doctors, needles, hospital equipment, or anything that reminds her of her brain surgery.

She will have her initial therapy appointment tomorrow morning, and then she'll be on a regular therapy schedule until her next surgery.

Thank you all so much for thinking about and praying for Indigo. She is our warrior!

#indigostrong
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Quick update on Indigo:

She's happier now that she's home, but she still hasn't been able to pass her swallow test. Megan and Rob have to use special medical thickeners in her drinks just so that she can stay hydrated.

Indigo had also been looking forward to starting preschool this fall so that she could go to the same school as her big sister. Unfortunately, Megan had to officially withdraw Indigo's registration on the doctors' advice. They were very worried that Indigo might have another stroke that would go unnoticed in a busy classroom.

Instead, Indigo will be going to speech, occupational and physical therapies five days a week.

Thank you all again and again for your help and love for our brave little Indigo Rose!
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Here's an update on Indigo directly from Megan (Indigo's mom and my sister):

"We are home and it’s a little bitter sweet. There’s nothing more they can do for us at this point so we are home where Indi will hopefully be more comfortable and be a kid again.

The next few months will be filled with lots of therapy and medications. We have little more than hope to keep away future strokes, but we need her brain to be as healthy as possible in preparation for her next big surgery.

Thank you to family, friends, and perfect strangers who have prayed for us, fed us, and cried with us. We are so lucky to have such a mass of beautiful and strong people in our lives who have walked with us down such a dark road. The love, compassion, and generosity we have been shown is overwhelming beyond words.

Here’s to hope and courage and miracles."
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First, I want to thank everyone who has taken the time to read Indigo’s story, and to contribute to her recovery through prayers, good wishes, or donations. Just knowing that so many people are pulling for Indigo has brought our whole family, and especially Megan and Rob, an overwhelming sense of gratitude and renewed hope.

Indigo is still recovering from the brain surgery itself. The neurosurgeons had to graft a major vein from a branch of her scalp artery to a branch of her brain artery in order to improve the blood supply to her brain. Indigo’s brain started to hemorrhage during the surgery, so the neurosurgeons had to put off repairing her arteries on the right side of her head for another six months, which should allow enough time for her brain to heal. The hemorrhage caused an additional stroke and seizures, but she has stopped hemorrhaging now, which was wonderful news to get. She has a three-inch scar on her head and some facial swelling, which will reduce over time.

We are in the process of trying to get her well enough to go home before she has to come back in another six months. Right now, she is having trouble maintaining her blood pressure without medical intervention. She also failed a swallow test, which means that she is having trouble drinking and eating. The greatest fear about failing that particular test is that she could aspirate. Aspiration happens when food or drink goes down the airway instead of the esophagus, which could lead to pneumonia.

Indigo is slowly improving from the surgery, strokes, and seizures, but she is facing months of rehabilitation. She will need speech therapy, occupational therapy, and physical therapy when she gets home. It’s going to be a long, hard road for our beautiful Indigo. Please keep sending your love and your prayers!

#indigostrong
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$40,679 of $50,000 goal

Raised by 479 people in 1 month
Created May 13, 2018
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