The Work-up

This week will begin Zoe’s transition to the care of Duke Medical Center, specifically the Duke Pediatric Bone Marrow Transplant unit, or PBMT. We have a total of 19 appointments this week, so we shouldn’t lack for activity.

For the benefit of those following and potentially other parents wondering what to expect in each stage of this battle, I’m going to cover our schedule for the week. I’ll also be doing my best to document our time from here on in detail, including with pictures where appropriate.

There will be scary moments in the coming weeks and months, and there will be pictures that will not have Zoe at her best. We’re keeping this journal for a number of reasons: to manage our own emotions and to communicate with family and friends, but also to try and give a road map for others who may find themselves with a child fighting for life and not know where to begin with it all.

I’m trying to create what I would have wanted to find that first night, when I went home with the diagnosis and tried to cope by reading everything I could get my hands on.

Monday

Check-in at the PBMT clinic:

  • Vitals taken
  • First lab draw, 1/2 of the blood needed for pre-transplant lab work
  • Respiratory vital battery & nasal wash (to check for virus)
  • Medical history review

Meeting with PBMT coordinator for education session
Meeting with the PBMT Social Worker for evaluation

Tuesday

Check-in:

  • Vitals taken

Meeting with Dr. P, primary transplant doctor for discussion

Check-in:

  • Hearing test
  • Crying Vital Capacities — study of lung function
  • EKG (heart study)

Wedsnesday

Check-in at Pediatric Radiology:

  • Chest x-ray
  • CT scan of the brain, sinus, chest, abdomen and pelvis
  • Echo cardiogram (heart study)

NPO for today starting at 7am 😦

Thursday

Check-in:

  • Vitals

Check-in at Pediatric Radiology:

  • Kidney function test (GFR): dye will be injected into Zoe’s central line, then a tube of blood will be drawn at 1 and 3 hour intervals
  • Remaining pre-transplant labs drawn

Meeting with PBMT coordinator during GFR wait
Meeting with PBMT team at large
Meeting with Family Support Program
Meeting with Insurance Coordinator

Friday

Meeting with PBMT coordinator: Consents and Paperwork
Check-in at Duke University Eye Center for eye exam
Check-in at PBMT clinic for pre-operative screening consult

Future

After this week, assuming all goes well, we will have at least one additional day of meetings next week to review. At that point the admission date will be set to begin conditioning and the countdown to transplant.

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