Today was much like yesterday...a few setbacks with Elizabeth's medical condition but continued progress in our relationship with her and sense of our being a family.
Several days ago, The Team suspected Elizabeth might have a blood clot filling up one of the major vessels leading to her heart. They thought this would likely explain her legs turning blue when she cries. An ultrasound performed yesterday or late Thursday confirmed their suspicions. Normally, they don't treat these clots, but unfortunately, this is no ordinary blood clot. Setting yet another record, it extends from the vessel behind her left knee all the way up to where blood enters her heart. There is a much smaller one forming on the right side too. Because they fear it might extend further without treatment (possibly risking her kidneys or heart) she has been started on a blood thinner. This is a risky decision because she just stopped having the bleeding from her stomach and it could restart. With her blood thinned now, this re-bleeding could be difficult to stop and prove even more serious.
Elizabeth's sodium continues to be mysteriously low and difficult to appropriately elevate. Lab tests have failed to reveal a clear cause, so we're tinkering with giving her tons more sodium.
The good news:
The results of the brain wave scan (EEG) came back normal. We've included a photo of the Elizabeth getting her EEG- quite a few wires!
This morning, they placed another feeding tube into Elizabeth's stomach, hoping food would go down and stay down...so far so good. She's had some VERY minor vomiting compared to previous tries. Tonight, we learned that once Elizabeth gets enough of the Portagen feedings in her system, her pee, poop and sweat will all begin smelling like rotten eggs! Somehow, I doubt that will dissuade us from wanting to be close to her.
The chest tube drained 180 ml of fluid, slightly down from the previous 24 hours.
We heard that if we can get to the stage where the chest tube comes out, the tube feedings and intravenous antibiotics are things we can learn to do at home.
Specific Prayer requests:
1. That Elizabeth's stomach would stop bleeding and not restart now that she is on blood thinners.
2. That the blood clot would not propagate, but start to dissolve and go away
3. That her sodium level would correct to normal
4. That she would continue tolerating the tube feedings without much vomiting
5. That our nightly bath and holding ritual would continue FOREVER!
6. That Jeannie or Sheila would always be assigned as her nurse, and come home to live with us when Elizabeth does.
Look forward to a Sara-authored update soon! Guaranteed to include many more details on our non-medical thoughts, feelings, hopes, and aspirations!
Love you all,
Matt (and Sara)