Day 12: First Smile

When I got to Shayna's at 8am this morning she started asking me for food for the first time since I upset her belly the first day of feeding again.  By the time I took a break at 2 (Nahum and Hilary are with her), she'd had 5oz already!  After breakfast, we played pee-a-boo with a napkin while I held her and I got the first smile out of her.  She's feeling much better so is interacting a more (playing with my face, picking up her toys).  She can almost sit on her own again.  It's kind of been like a newborn on fast forward watching her come back to where she was pre-transplant.  It's a long PT road ahead to get there but with my pushing yesterday and this morning and her sick of lying in bed, she wants to do more all the time.  She also took a real 45min nap this morning and cried for food when she woke after not sleeping at all yesterday.  (It's amazing to watch the breast milk actually disappear from the fridge for the first time in 3 months.)

As you can see, today is great compared to yesterday.  Yesterday was bad for multiple reasons.  Her FK/Prograf/Tacrolimus (the anti-rejection medication) levels were ski high at 20+ (goals are usually 8-12, but not sure exactly what the docs are shooting for for her) with a lower magnesium level (a common side effect of FK).  This combo can make kids really jumpy and jittery.  Combine this with the bit of withdrawal she is suffering and you get the scare we had yesterday.  I don't think she slept much in the middle of the night with Michael but she did have long periods of quiet in her crib.  The jumpiness made any motion or noise impossible.

The meeting  with her doc was good this morning.  They're still not seeing the bile drainage they want to but the ducts they connected to on her new liver were so small that any amount of swell at the connection site could restrict drainage.  We'll get an ultrasound tomorrow if the issue continues.  Dr. Kyle (Soltys) upped her night feed for tonight from 15ml/hr to 20ml/hr.  We're continuing on the methadone ween.  Dosing is still every 8hr, but the amount was backed off (0.375mg? to .25mg? (I'm sure to the numbers but not the units)).  It's a fine balance managing pain and treating/causing addiction.

I'll end with a fun note: There is no more yellow in her eyes!