She was 1 year old. She had already had one open heart surgery. She rapidly declined at home. (SpO2 was ~50 by the time we hit the ER doors)
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Saving Savannah: a Healthcare Story 2 years ago, I put my baby girl on a helicopter and prayed I'd see her alive when it landed.pic.twitter.com/tXRUqKod4E
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Our local hospital was nowhere near equipped to care for her, so her medical team at Cincinnati Children's sent their transport team.
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We drove at questionable speed behind the helicopter. Savannah was settled in the Cardiac ICU when we arrived. She was incredibly sick.pic.twitter.com/HmGUCdeSOO
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She was having a rare & very seriously complication from her open heart surgery 4mo earlier. She was not going to recover without surgery.
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Cincinnati consulted with her surgeon in Boston, who cleared his OR schedule and said "get her here as quickly as you can." So we did.pic.twitter.com/p7glD2vuhT
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Cincinnati's transport team loaded her in a specialized medical jet capable of advanced life support if she crashed. I got to go this time.pic.twitter.com/KiRlFbbhWg
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I can't say enough good things about Cinci's transport. They were amazing & kept her safe & stable. My husband flew commercial behind us.pic.twitter.com/VK9MZld2Zp
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She wasn't stable without a boatload of meds. She had a cardiac cath and detailed echo imaging when we arrived, then she was off to the OR.pic.twitter.com/KcYvvH1A8t
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4hr run on bypass with her heart stopped. Praise God it started beating again. She came back to us still so sick but with hope of healing.pic.twitter.com/7lywxO6ZpI
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Recovery was rough and complicated. She spiked fevers and had cold rags on her constantly. She struggled with fluid and breathing well.pic.twitter.com/0791pQh1hV
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We made some forward progress but then stopped. The decision was made to send her back to the cath Lab to investigate.pic.twitter.com/8FJuPkxWGy
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She had horrible complications. We almost lost her that night. Almost no BP, heart rate near 250. It was the scariest night of my life.pic.twitter.com/UUfDR0MKrw
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She lived. She survived. And she fought with strength beyond her size. And we slowly edged forward again.pic.twitter.com/auhZTGjQZV
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And I saw my baby smile again. And I saw her sit up on her own and play. And I saw it among the pokes and the labs and the awful pain.pic.twitter.com/YwY6FmkUwz
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We spent Halloween in the hospital. My little pumpkin kept slowly, carefully edging forward. Lots of steps back, but still pushing forward.pic.twitter.com/5By15KBHJJ
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And after 2 months, we were discharged locally for a couple weeks of follow up, then cautiously allowed to drive the 900+ miles home.pic.twitter.com/c1SMn5h2Lh
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It took months before she was off oxygen. Her meds were frequent & many. But she lived. She survived the odds against her. She turned 2.pic.twitter.com/VjayOCgUfw
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And in November, she will turn 4. She still has incredible medical needs, but she is joy personified.pic.twitter.com/YmfYfkRFsS
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The cost of those two months of saving her life? Over ONE MILLION dollars. More than our insurance's lifetime cap Pre-ACA. In two months.pic.twitter.com/6C9IyRhS8y
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Without the ACA, she wouldn't be insured any more. She wouldn't have gotten the transport, care, and surgery needed to survive.
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Without the ACA, she wouldn't have her medications every day. They're over $1,500 a month without insurance and we aren't rich.pic.twitter.com/nY60iDajod
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Without the ACA, she could face higher premiums or denial of treatment for her numerous preexisting conditions.pic.twitter.com/TNsyGYENgp
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Under Graham-Cassidy bill, Savannah would not be guaranteed the coverage she has today, that saved her life & gave her pink toes.pic.twitter.com/93dj2RHuF0
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Under GCHJ, kids like her might not get what they need to survive. That doesn't pass the
@jimmykimmel test OR the "decent human being" test.pic.twitter.com/27NpNlPEOk
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So if you wouldn't stand between this child and the doctors saving her, then you need to stand up and tell the
@GOP to say NO to GCHJ.pic.twitter.com/JpArLCgw4q
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Call 202-224-3121 & tell them: No cuts. No caps. No discrimination of preexisting conditions OR new diagnoses. Help
#SaveSavannah again.pic.twitter.com/Ks8BWePelg
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