Day +43: Home Sweet Home (Away From Home)

Maya ready for the big day

We’re out! What a day. Maya and I arrived at the hospital this morning around 10 to help pack up and do some celebratory dancing while we waited for Zoe’s meds to finish. She’ll continue to be on various medications for awhile, and TPN (IV nutrition) for a few weeks until she’s eating normally again.

Zoe knows something is up

Zoe knows something is up

Our unit is still largely on isolation due to the summer cold that went around. Though most of the kids and parents were negative, we’re kept on isolation for the duration of our stay just to be safe. This meant that our confetti parade was  almost all nurses, with a few parents and kids watching through their blinds.

It was a really nice moment, though. We’re incredibly grateful for everything Duke and WFU have done for us. Zoe had what can only be considered a successful and relatively easy stay, considering her procedure, and I have to believe that Duke’s transplant expertise and care contributed heavily to that success.

From here on we’ll be outpatient, with clinic visits daily for awhile. We’ll be managing all of the things that the hospital managed while staying there, only now it’s split — med administration, blood draws and dressing changes happen at “home”, tests and checkups happen at the clinic.

I’ll go into more detail about everything once we understand it all, honestly it’s a little overwhelming.

For now, we’re going to get some sleep and enjoy being together again.


First Outpatient Visit

We gathered our courage (and our baby) and made our way back into the hospital for our first clinic visit as outpatients yesterday. The purpose was to check up on her, do her counts and generally make sure we weren’t bungling things too badly at home.

It was a good visit overall. Her blood pressure was the best we’ve seen since before she was initially sick with the bronchial mess about 1.5 months ago: 83/44. That’s normal for an infant, clearly Zoe is happy to be at home too. She spent a great deal of the weekend sleeping without being poked, suctioned, tested or stuck, and it paid off.


  • WBC: 1.5
  • RBC 2.93
  • Hemo: 8.7
  • Platelets: 381 (wow, this one had the doctor grinning ear to ear)
  • BP: 83/44
  • Temp: 98.4

Our outpatient visits will take place 2x a week, on Mondays and Thurs for now. We’ll be doing checkups on Monday, and on Thursday she gets her Etoposide dose over several hours along with a LP (spinal tap) for the next week or two.

We feel gratified so far that we pushed to get her out of the hospital when her BP stabilized. There’s just a feeling of diminishing returns after awhile in the hospital — a greater chance of reinfection and a loss of will and spirit in the face of the daily grind. A peaceful sleeping baby is an amazing sight after the past few weeks.