Each thursday for awhile Zoe will be headed into the outpatient clinic to get her LP (spinal tap), her Etoposide dose, and her blood draws. This complicates her day quite a bit. Here’s a look at her routine for the day:

  • 4am, last feeding for the morning in advance of Zoe’s “8am” surgery appointment
  • 6am, Zoe wakes and starts to fuss for her breakfast, won’t go back to sleep due to hunger. This is very nearly the worst part, listening to a crying baby and not being able to soothe her fully causes me to break out into a sweat almost instantly
  • 7am, we’re up fully now and starting to prepare her meds for the morning
  • 7:20, Zoe takes her meds. We held off on giving cyclosporine because they’re taking her levels in a couple hours — giving a dose on top of a blood draw results in an incorrectly high reading. We also skip her 2nd blood pressure me, the Atenolol, since she’s due to go under anesthesia shortly and we’re scared having two BP meds on top of that might be dangerous. Zoe eats her meds much more easily than usual; there’s something heartbreaking about a baby who takes her meds greedily because she can’t eat.
  • 8am, we’re at the clinic; Zoe gets a blood draw once we’re in the room but her Broviac/central line is so small that it doesn’t give up blood easily — we have to pump her little arms around and roll her back and forth until they get enough blood for the tests. At least she’s getting her exercise.
  • 9am, Dr. M is back, stops by to take a look at Zoe. He’s encouraged by her counts and says that her fussiness, puffy cheeks and hunger should start to drop as we continue to drop the steroid dosage; he advises us we were quite right to skip the 2nd BP med, which is a relief
  • 10:15, they finally come to pick us up for Zoe’s procedure; we were first in line we’re told but I imagine they took care of someone else while we were getting blood draws and the exam
  • 10:45, they start the Lumbar Puncture procedure; the anesthesiologist confirms she hasn’t had anything to drink since 4 and we discuss which meds she took this morning to be sure they know about skipping the 2nd BP dose
  • 11am, it takes 3 sticks in her back to get the LP done; it’s terrifying, no other word comes to mind
  • 11:15, they tip her head down at a shallow angle on the table so that the medication introduced into her spinal fluid can flow down and fully saturate the area around the brain; the goal here is to ensure those few histiocytes they’ve seen in her spinal fluid don’t have a chance to collect in her brain, the medication should suppress them
  • 11:30, we’re moved to observation for Zoe’s VP-16/Etoposide dose for the week
  • 12:30, while on the VP-16 drip Zoe’s face flushes; we’re concerned as to why, she appears to be asleep peacefully on the dregs of the anesthesia; the doctor takes a look, feels it’s her steroids — no other signs anywhere, pulse/o2 is good and bp is 92/44; VP-16 resumes.
  • 1pm, flush is worse, Zoe is an angry red now so we call in the troops; VP-16 is paused and they administer a dose of Benadryl — the determination is to wait 15min and if her color is the same or improved, we resume VP-16 at half speed. This means we’ll be here an additional 2.5 hours to complete the drip.
  • 1:30, Dr. M stops back by to discuss Zoe’s counts. He seems really optimistic and happy about them, more so than ever before. Almost everything has improved but in particular her WBC count has moved out of the infection danger zone, meaning Zoe is a little safer day to day now.
  • 2:15, flush is completely gone. Benadryl is some amazing stuff.
  • 3:30, VP-16 complete, the long day is nearly over; a little stomach upset that seems to pass after a few diaper changes over about 15minutes
  • 4pm, we change Zoe’s Broviak dressing; the process for this is fully sterile, meaning a sterilized dressing pouch and a simple ritualistic routine to ensure no contaminants get near her line opening
  • 4:30, home again; Zoe wants nothing more than to sleep, we settle her into bed for a nice nap
  • 7:30, meds again, and more sleep to round out the long day

It’s strange at the end of the day to realize that we spent a full “work” day in the hospital managing this, Michelle and I. I don’t know how any family could do this without support, it’s really quite daunting. The reward is that Zoe looks beautiful and calm come bedtime. Progress.