Never a Dull Day

Well, we headed into the hospital for our routine blood draw for CBC and vitals, and ended up in there an extra 3 hours.

Typically the way the blood draw works is this: the nurse flushes her Broviac line with Heparin to prevent coagulating, and then with part of a syringe of saline. Once the saline is in, they start to draw back on the plunger and see if any staining happens, meaning blood is in the line and ready to be drawn. That’s the goal.

Instead, we often end up pushing an entire syringe of saline in, then go through a dance where Michelle or I move Zoe’s limbs up and down, pumping her like a little old fashioned water well, or roll her over and around trying to find a position where the blood will enter the line.

This isn’t the way it should be, but we have just learned to deal with it. She’s very small and so is her line.

Today, we did exactly that, except there was no staining in the saline, no matter what we tried. The nurse proceeded to push a 2nd syringe of saline in, and still nothing showed. She pumped the syringe for awhile, and then one of us pulled Zoe’s shirt back, Michelle I think, because she noticed some liquid. Turns out the saline was escaping the line and Zoe now had a huge bubble of fluid boiling up under her skin just above the Broviac.

Now, we’ve come to have a decent level of calm in these visits, but this was a real challenge. The lump was really big and quite startling. It was a reminder of how quickly something can happen and upend our sense of calm, potentially putting us back in the hospital unexpectedly.

My first thought was not pretty — I was a little irritable at the amount of saline pushed in so quickly — but I’ve learned to restrain myself a little to wait and see how the doctors react before reacting too strongly myself. We stopped the attempted blood draw, got the doctor in, and had a look. Her first remark when she saw my face was, “oh don’t worry it’ll be reabsorbed, she’ll be ok”. I would have liked to see my face just before she said that, I’m sure it was priceless.

Soon we were settled in a room waiting for the surgeon to come take a look. When he arrived an hour later the bump had disappeared, the fluid absorbed. He reassured us that the Broviac issue was  not something to be terribly concerned about, but that we would want to put in a new line. It’s necessary not only for easier blood draws, but for administration of Zoe’s VP-16 chemotherapy.

This line was no longer needed, however. So what do we do? Pull it out. Right there on the little exam table, let’s yank out the direct line into her heart that took a 2hour procedure and anesthesia to put in!

I would never have been cut out for medicine, I realize now. There is an old wives tale about fathers passed out on the floor of the hospital whenever there is blood, and I’ve begun to wonder if it’s not a wives’ tale so much as a cautionary story.

The removal went fine, of course, the surgeon was not concerned and I’m sure he pulls tubes out of babies hearts all day long, but boy it was a little nerve wracking on our end. He held a bandage over the hole in her chest for a few moments, announced it was all set, and they applied the new dressing. Apparently it closes so quickly there is not need to worry about blood leakage or other problems. What a relief!

We’re on track for another long day on Thursday, Zoe will get her LP, her new Broviac, and a four hour drip of VP-16.

Vitals for the day:

  • WBC: 2.4
  • RBC: 3.0
  • Hemo: 9.0
  • Platelets: 613
  • Sodium: 132 (a little low still)
  • Creatinine: .1 (normal is .3-.7, this is a marker for kidney function and the doctor felt it was fine)

The Thursday Routine

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.

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.

A Very Good Friday

We’re home!

It’s the end of the first phase of this long road toward recovery, and we couldn’t be happier to be out of the hospital. There are a lot of reasons to be cautious, and some big hurdles ahead, but we have to appreciate each step forward as best we can.

Zoe is looking pretty good. She’s lost another 2 inches in girth, though she still has her steroid cheeks, and her vitals are all “ok”. Her blood counts are a little low, as expected, but not enough to be a concern at the moment with the medications she’s on supporting her. Her vitals for the record on her day of discharge:

  • WBC: 1.2
  • RBC: 3.07
  • Hemo: 9.2
  • Platelets: 93k
  • Temp 99
  • BP: 100/43 (a particularly good reading, some still come back over 110/60)

That’s it for now, more once we’re settled in at home.