Day 13: So far so good

It's really hard not to get too excited but things seem to be going remarkably well.  Shayna continues her steady improvement.  While her naps yesterday and the first 1/2 of the night were fitful, I finally swaddled her arms (so she doesn't startle and wake herself up) and she slept like a baby until she was woken for her 7am ultrasound.

Blood flow in her new liver continues to look good but there is concern that the bile ducts aren't draining well.  That and one of her liver numbers (Ggt) isn't coming down are the only things of concern.  All of her cultures from various fevers have been negative.  She ate a whole 13oz yesterday and got another 5.33oz via the night's tube feed.  She sat unsupported with me in our doorway last night and people watched.  We took a walk around the ward in a little red wagon. (I've got a tumble seat from PT that I propped up in the wagon for her.)   The miracle for the day for me was how well she slept last night.  She as no continuous iv fluids (no more vein food as she's eating well).  Last night was the last night of tube feeds (more work for me, but a very important step to discharge).    She is currently wire free until she's on the monitors for heart rate, respiratory rate, etc.  Her 2nd JP drain also fell 1/2 way out so was fully removed (no more belly juice bulb!).  The drainage had significantly decreased, but she still has some work to get her body to fully quit draining fluid into her belly. (This is a continuation of the aceites we fought before transplant.  Her body needs time to readjust to the new situation including stopping the fluid drainage into her belly.)

Michael got here as we were heading down for ultrasound.  She ate 2oz when we got back to the room then I handed her to Michael so I could shower and pump.  She did not protest in the slightest, just kept her eye on me when I came into view.  I gave Michael a bottle which she quite willingly took from him.  It's wonderful to see how comfortable she has gotten with him as none of that would have happened before.  I took a beautiful hour stroll in the neighborhood and up to the top of the 40th St bridge (over the Allegheny River) and found one of the river walk trails.  PT came by while I was gone and Shayna gave Grandpa another compliment by reaching for him while the PT lady was working with her.  I got back just in time for rounds.

That's where we got good and bad news.  Since the Ggt isn't coming down there's a liver biopsy schedule for tomorrow.  It the Ggt is still elevated with 6am labs, she'll have to have a biopsy.  If they do come down, there's a good chance we'll be discharged on Friday.  Otherwise it'll probably be early next week.

She just woke from her 2nd nap.  Nahum is going to feed her.  After that we'll do 5-10min of sitting and playing so she gets some work then we'll take her off the floor for a stroll in the little red wagon.  There's C-mas decorations on the 6th floor (we're on the 7th in ward 7b).  I want to show her the tree.