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)

Surgery & Etoposide

Zoe starts the day with a NPO or not by mouth order that begins at midnight, so she will spend her night without food to prepare for her surgery in the morning. It’s a rough night, but she’s a real trooper. She fusses and ensures that we all know that she has not had enough to eat for her taste, but around 2:30 or 2:45 she decides to let it go and catch some sleep. She sleeps until 6am when the first of the many nurse and doctor visits of the day begin.

Surgery is scheduled for 8:45am. We get visits from the surgical resident to sign off on paperwork and later from nurses to take her labs and prep her for travel down to the operating room. They also give her 2 more infusions of platelets to ensure she is not at risk of bleed out during surgery, which would have been a serious concern a couple days prior. Around 9am we take the trip down and soon we’re settled into the waiting room, a huge room the largest feature of which is a ~30ft long ship re-creation for kids in the the middle of the room. I almost wish Maya were here, I’m certain she’d have scaled it right up to the false clouds hanging above it by now and be dangling like a little monkey.

After about an hour we speak to the surgeon, who indicates that Zoe has done very well, no problems or complications. The surgery was to install the Central Line or catheter in her chest so that she can begin the 3rd and final of her trio of chemotherapy medications, Etoposide. After another 30 minutes or so to wait for her anesthesia to wear off, we get to go meet up with Zoe for the trip back upstairs.

We have a brief visit from Dr. M mid-morning, he’s about to rotate off for two weeks presumably to do his teaching rotation at WFU. I bring up with him the thoughts listed under Contemplating the Bone Marrow Transplant and he is very receptive to our concerns. He’s able to confirm my fears that there is not a way to 100% rule in the acquired form of HLH, meaning we will have some tense moments ahead if we cannot positively confirm the FHLH. He is, however, open to doing chemo only should there not be any markers for the FHLH variation present in her genetic tests. We won’t be able for some time to know the answer to this.

Later in the day we finally meet Dr. B, the Hemo/Onc doc who is rotating in and will be covering Zoe for her next two weeks. Dr. B is an infectious disease specialist in addition to his Hemo/Onc specialty, so he is able to answer some of our questions in a slightly different way than Dr. M. The whole conversation reminds us of how important it is to speak to more than one doc about such matters, the presentation alone can offer a lot of insights and information that we’d have no way to ask after but glean from the difference in conversation styles.

His infectious disease specialty specifically offers experience with helping children survive the BMT procedure, and he was able to reassure us somewhat that he had seen quite a few children through that process without incident.

We ask after ways to rule in or out the disease variations, and Dr. B mentions the genetic markers which we’ve drawn blood for and which will be sent to Cincinnati. We’ve already discussed these with Dr. M so this is just confirmation, however Dr. B does offer another possibility, NK cell function. I honestly do not yet know what this means, we haven’t yet had time to research it, but it is reassuring to feel that there may be multiple ways to rule in or out the need for the BMT. Additionally, the NK cell function monitoring test can apparently yield results in days rather than weeks.

When asked for ways that Michelle and I might monitor Zoe’s progress toward disease remission, Dr. B offered two indicators of disease activity: Ferritin and IL2/CD25. He will try to keep us up to date on the status of those two indicators so that we know as much as we can week to week where we are.

At 3:45 Zoe began the last of her 3 chemotherapy drugs, this one the Etopocide, the most harmful of the three and the one most likely to cause the types of effects most of us tend to associate with chemo. Zoe was monitored for an allergic reaction during the initial drip, one of the risk factors, but none was present. She was chipper and playing with her hair while the nurses and Michelle and I took turns chatting with her. Zoe will be getting the Etopocide on Mondays and Thursdays each week until she is in remission.

All in all a decent end to a stressful day.