Fifth night - Monday

Muriel had a really great day today.  She was awake, alert, and even smiled once this evening.  Unless that was gas.  She got to sit in our laps several times for several hours.  We read books, blew bubbles, and even played some guitar.  Its 10:30PM now and she is starting to fall asleep.  Perhaps she will start getting back to her normal schedule.

Mommy gets to hold her again tonight

We still have some challenges - still battling Potassium and Calcium deficiencies.  Still battling throwing up after the supplements are swallowed.  Big surprise there.  Even more drugs today to tweak chemistry - her blood is getting very alkaline, for example, due to the diuretics.  There's a drug for that.

Something new today - the liquid draining from one of her chest tubes has a milky appearance.  This may indicate that she has a leak in her lymphatic system (Chylothorax), filling her chest cavity with "Chyle".  One of Chyle's components is undigested fat.  We have been asked to feed her fatty foods today to see if it changes the composition of the fluid.  So she got to eat a lot of ice cream and soy milk.  Jury is still out on this - expect to know more tomorrow.

Also still trying to get some poop out of this little girl.  She keeps literally rejecting the suppositories.  We actually found one on the FLOOR today.  Still scratching my head how that could have possibly gotten there.

All in all she has turned the corner.  She is comfortable and tolerant of the situation.  Should only get better from here, and maybe we will be out of this place by the weekend if not sooner.

Guitar as a percussive instrument