Day +82: Talking About Release

Today’s clinic visit brought interesting news, there was talk for the first time about a release date. Release at this point means being allowed to return home and switching our long term care to Wake Forest University Hospital (Brenner). They suggested we could be released as early as two weeks from now, but I don’t think that it’s likely to happen that soon, mostly for our own reasons.

Michelle and I want to be sure, absolutely sure, that before we leave Duke’s care and the care of the doctors who now know Zoe best, that she has no dangers remaining, beyond the normal risk of infection. We want her graft to be firmly in place (it is), her counts to be at a stable level (not quite yet), and more than anything, her lines to come out.

Right now we’re having a very messy time with her feeding and medication. Zoe came off of the IV nutrition very recently, but we’re still struggling to get her intake up to where she is supposed to be. She has lost a little weight — which is probably a good thing — but we don’t want her to lose any more.

Generally at this age kids are supposed to be taking in around 30oz per day, however Zoe is closer to 15-20 most days, not including her meds. Her meds add another few oz, but the concern remains that she hasn’t found her groove yet with feeding.

In addition, her meds are a mess. We have a terrible time getting her to keep the oral meds down, but the only way to get her lines out is to go on all oral meds. A conundrum. We’ve asked to have her go back on Zofran for spit-ups in order to try and keep more of her fluids and oral meds down.

In general, her age is such that she has suddenly found her voice (fussing more than she used to), her strength (she yanks at everything, swats away syringes, etc), and her will to drool. Suddenly nothing can be easy, as if it ever was.

If I stand back, I begin to realize how far we’ve come. We’re talking about going home at some point in the next month or two, and that wouldn’t happen if she were in serious danger. Zoe’s growing up really fast now, someone opened the gates while we weren’t looking and she is off and running.

These are great things, but somehow, no matter how many steps forward we take, there still seems to be something to fret about.

I suppose at least the things we’re fretting about now are much more reasonable than life or death. I have a feeling that, once these few weeks of rough travel pass and Zoe has learned to eat her solids and her med situation is stable again, the rest will sort itself out.

It’s very hard to shift out of emergency gear though.

Day -5: Checking into PBMT

Zoe has had a big day so far today. We’ve just checked into the Duke Pediatric Blood & Marrow Transplant unit (PBMT), known here as 5200.

We started off this morning with two alarms to wake us up: one at 3:30am, and one at 5am. The first was to get Zoe’s last feeding in before her NPO starts and she isn’t allowed to eat, the second to get us up in time to make a 6am surgery check-in. We didn’t actually make it in until 6:30 am, but who’s counting.

The procedure went as well as could be hoped for. Zoe got a 2nd Central Line put in (installed?), and now has 3 tubes dangling from her little chest. One from the original Broviac, and 2 from the new one, which is what’s called a double lumen. She is recovering just fine, other than a little flush we didn’t notice any major changes to her temperament or condition after the surgeon was done.

Later in the day Zoe is due for her last dose of Fludarabine. Fludarabine week has flown by, we’ve seen little or no reactions whatsoever, so when they say it’s a well-tolerated medication they aren’t kidding. The next few days should get more intense as we finish up conditioning and knock out the rest of her bone marrow. She will have no immune system left by the end of day Monday, so between now and then we will see how things go.

A little about the PBMT unit, or 5200.

The Pediatric Blood & Marrow Transplant unit is a self-contained portion of the hospital reserved specifically for transplant patients. It has 16 beds, a common room for kid’s activities (including siblings), a kitchen and laundry for parents’ use, and a room to store workout equipment and large toys.

Each room, with the exception of two (which are a suite of sorts, sharing a bathroom when siblings are being treated), has it’s own bathroom reserved for the occupying child’s use, or in the case of infants the live-in parent’s use. Rooms also have a small TV, refrigerator and “couch” that folds down for the live-in parent to sleep on.


The unit itself is on a separate air system and is what’s called positive pressure. This means that all air enters the unit from it’s own system and only exits the unit. Outside air doesn’t enter to prevent airborne contaminants or infections.

To enter you go through a large hospital door into a room akin to an airlock. Only one door is allowed open at a time. Visitors enter, put covers on their shoes (or change into “clean” shoes from lockers that each room has) and wash. Then they can enter.

So far we’ve met several parents here, all very nice of course. One family from Wisconsin here with their 3 year old who just arrived pre-transplant, and another family 1 month post-transplant with both their 9 week old and their 2 year old, who had the same condition and are using the shared suite.

Finally, I didn’t get it up yesterday, but here’s a short clip of Zoe playing last night before we were admitted.


The Horrible Very Bad “NPO”

Nil Per Os: A Latin phrase which means, “nothing through the mouth”

Outside of the truly bad things, those three little letters have come to foreshadow more anguish and suffering around our household than most any other.

Don’t feed your baby. Don’t feed your baby.

It’s really hard to get that through the head, and even harder after a few hours of listening to her fuss about it. With an older child, I’d imagine you can explain somewhat, but Zoe only wants one thing at this point, and she just doesn’t understand when she doesn’t get it.

We’re due for Zoe’s new line to be installed today. We spoke to Dr. W and had the actual VP-16 moved back a day to our and her relief, so that she is not getting it right on the heels of the surgery and well into the night. In order to have the surgery though, Zoe has to have her anesthesia, and of course this means that little card appears with the dreaded NPO on it.

We have some confusion as to when the NPO is to start, and a little frustration as a result. Michelle was told initially 12am on the phone, with a surgery scheduled for 12pm. That’s 12 hours without food for a child who eats every 2 hours normally. A little harsh? You would think so. The nurse specifically said no milk or formula, even though the 12am time is typically for solid foods.

The point of confusion is that we were told 4 hours on Monday by the surgeon doing the procedure, and we tend to want to trust that number more.

So to try and resolve it, I call in, explain who I’m calling for, and that I need clarification on the NPO. “How long before the surgery do we need to wait to feed her?” 12am. I explain that Zoe is 3 months old, and immediately the response is “oh, well the NPO is more for solid foods she can have fluids up to five hours before.”

I feel sure that whatever information is available to whoever is making that decision must indicate her age. Surely. If it is, I wish that they would give us the 5 hour number up front.

After a little more back and forth, we clarify that it’s technically 4 hours, but they tack on an extra hour in case they want to move up her surgery, and the NPO is pretty much always set for 12am the day before surgery. Does it matter if it’s an infant? Technically yes, but in practice, no. They put what they put and it’s again up to the parent to push back and get the exact information, lest they suffer through needless additional hours of crying inconsolable baby stress.

Early in our stay at the hospital, for her first Broviac, this same thing happened exactly — one person told us 4 hours but someone else said midnight, we played it safe and went with midnight, and the result was a horrible experience for Zoe and Michelle and I. At that time Zoe’s blood pressure and heart rate were a concern, since she was still fighting back from her initial fever, yet still she was put on a 10-hour NPO crying and amping up her stress all night.

This time, we knew better. Progress!  And, now Zoe and her parents will get to sleep tonight instead of living the horror movie that is an unfed baby.

Update: Zoe is done with surgery, all went well. She was very very hungry by the time of it, and let everyone know.  As feared however, we did not actually get in there until 2pm.

I completely understand the difficulty in lining up multiple departments at one time to get the Surgeon, Anesthesiologist and Oncology NP in at the same time, but it feels like there must be a way that doesn’t involve infants going unfed for 7-12 hours routinely. At the very least making sure to distinguish between solid fed and breast/formula fed children seems like it would be a good idea.

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)