Miss Susannah needs your prayers!
I met Susannah and her mom Jess about 6 or so months ago. I happened upon a forum of a mom desperately trying to find out what was going on with her daughter. The story sounded exactly like a ROHHAD child but after months of testing and doctors Susannah found herself at NIH having surgery on her Adrenal Glands for Cushing's Syndrome.
She made it through surgery and has been home since. The photo above is her first day of Kindergarten.
Tonight I learned from her mom that Susannah is back in the hospital.
Last night her parents went to put her to bed and she was ice cold. Three temperature checks all ranging between 90 and 93 degrees - a sign of hypothermia while relaxing in her house! However, Susannah was feeling great and had no complaints.
Once at the ER the checked Susannah's sodium level and it was low at 121. After 7 pokes of a needle to get her blood they finally gave up and gave her 5 sodium chloride tablets. It took a few hours to get her sodium back up to a healthy level of 133 (135 - 145 is normal for a child).
They were able to get some blood and the family is currently waiting for good news. Her Endocrinologist doesn't believe there is an infection - it is thought that she is experiencing Thermal Dysregulation - which she had prior to her surgery.
Please send some good thoughts to Susannah - we want to get her home for Thanksgiving!
We love you Sus.....can't wait for you to see Haven's new puppy! I'll send pictures to your mom! :)
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