Eliza Update - 2/19 3pm

Dear family and friends,

As of yesterday, Eliza was showing more frequent signs of wakefulness: opening one or both eyes for several seconds, responding to touch with some reflexive movements, breathing more effectively. Today, she's much more sleepy, owing at least partly to the fact that she was given a few doses of a sedative last night. This was because she began showing clinical signs of seizure activity again: twitching feet and legs, rhythmic arm movements, breathing changes. We were surprised to hear of this development this morning, as we were under the impression that she would not be sedated again; after all, the main priority has been to see what she will do if/when she wakes up. But apparently the nurse practitioner last night was concerned for her comfort and decided along with the attending to sedate her again. We have been assured that Eliza will not be sedated again unless she shows obvious physical signs that the seizures are compromising her body, e.g. heart rate drops or breathing trouble, and not without our consent, even in the middle of the night.

On Monday, the doctors intend to try giving Eliza a nutritional supplement called pyridoxal 5 phosphate, a form of vitamin B6. As far as they know, this has never been given to a newborn (they ordered it on Amazon.com!), and it has certainly never been used at Duke. As a nutritional supplement and not a drug, it does not have FDA approval and will therefore require emergency approval from the powers-that-be at Duke in order for them to administer it. It is also unclear what, if any, side effects this vitamin will have. Pyridoxine, a slight variant of the same vitamin, is something they tried ten times already, and it did not seem to have any side effects, although it is also more commonly used. Pyridoxal 5 phosphate is a very long shot, as it is a very rare disorder that requires treatment in this way. But the doctors have run out of other things to try, so this is it. Eliza will be hooked up to the EEG again to monitor what, if any, effect this treatment has. We've been cautioned not to expect this to be the "magic bullet."

In other news, Luke and I are both sick; for Luke, that means that he's dealing less well with Mom and Dad being gone so much, and for me that means wearing a mask when I visit Eliza and being cautious about contaminating her in any way. After all, her immune system is so compromised that even a cold could prove fatal at this point. It hardly feels right to complain about colds, which are really so minor in comparison with what little Eliza is fighting, but they're an inconvenience all the same.

We appreciate your continued encouragement and prayers.

Love,
Daniele, Sam, Luke, and Eliza