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 +61: Keep on Truckin’

Not much has changed for Zoe, which is exactly what we want. Her counts remain solid, her WBC is holding at 4.2 as of today, though she did have GCSF on Friday. In terms of a trend she seems to be slowly ticking upward, holding on to more and more cells each week.

Her second chimera test blood draw also took place today, so I’ll be on edge until we hear back. They don’t always draw a second chimera test at 60 days, but Michelle and I had already determined to press the doctors to do it anyway — we want to be sure her last test wasn’t a fluke. Which of course it wasn’t, objectively, but at this stage we are still quite prone to worrying that something we can’t see is wrong. Luckily kids who are on the study all get tested again at 60 days anyway for a data point, so it was all part of the plan.

At home we’ve settled in quite nicely. We’re increasingly finding time for work and fun activities during the day, though it tends to be odd hours broken up by Zoe’s med schedule. Zoe has worked her way up to almost 10 ounces per day of breast milk, meaning we may be able to get off the IV nutrition soon. That would take a good hour and a half off of our daily routine, time we’d be grateful to have back.

Maya is doing well, we have a number of activities we’ve worked out to get her out of the apartment and playing with other kids. Keeping up her social life is really important at this age, and we’re lucky to have a number of friends here and back a home a short drive away willing to meet up for play dates.

We did find out that Maya is not going to be able to return to school this year, it’s just too dangerous for Zoe at this point should something hitch a ride home with Maya and get us sick. Her school is a really good one, but it’s just not possible to ensure she won’t bring something home and the doctors said no to her return this year.

Once Zoe is a little further along, likely next spring, Maya can start up again. Thankfully the girls are both very young, she won’t miss as much as she would even a year or two from now.

Day +??

I was walking through the children’s clinic wing of the hospital a couple days ago with Maya on the way to drop off labs, and the thought occurred to me: I don’t know what day + we are anymore. I worked it out, and it appears we are at Day +55 now. 45 more days ’til +100.

What a difference being outside of the hospital has made. We’ve transitioned from micro-management of Zoe’s care, stress and hospital life, to trying to become a whole family again. Fewer worries about which Day+ we are, more worries about making sure Zoe and Maya both have their share of our time. The scares are almost gone, replaced by calmer fretting about Maya having a bad dream, or Zoe not getting enough time on her belly with her lines in the way.

They call it the “new normal”. Finding our routines, our calm, yet still managing the care of a child who needs just a little bit more. Zoe still needs a great deal of care, and will continue to for some time, but we have to work it into our lives in such a way that we can provide normalcy for ourselves and the girls.

Early on in our inpatient stay at Duke, during a visit with Dr. P, Zoe’s primary doctor, the subject of Zoe exiting all of this as a “normal” little girl came up. We were worried, with good reason, that she might not escape this disease without major problems — neurological, developmental, or even death are reasonable possibilities. At the time even the thought of returning to normal seemed too much to ask, even.

Dr. P made a point of saying that, after we made it through all of this, there would come a time where we would have to start treating Zoe as one of our kids, not as a patient. It seems strange to say it, but it’s true — it’s hard not to see everything through the lens of her disease at this point. He explained that it is common for parents to struggle with enforcing rules, establishing fairness among siblings, and encouraging the kids to bump and tumble and, well, grow up.

One day we’ll have to transition out of emergency mode, and into our “new normal”. That’s what this past week has felt like, that we’ve begun that journey. We have worked out the med schedule and we’re maintaining Zoe’s care, but we’re also doing some work here and there, and taking time to do fun things again.

Michelle and Maya made it to the beach for a day trip this past weekend, and Zoe and I stayed here in town and played and watched a series of bad comic book movies on FX. That sort of Sunday would have seemed inconceivable a short time ago. I had been determined to see that Maya got to the beach this summer, but it was looking unlikely there for awhile. I’m thrilled we pulled it off though, Maya had an absolute blast.

On the medical front, we have a couple more weeks of TPN while we transition Zoe back to breast milk. She lost her latch in the transplant, she simply appears to have forgotten how, and so far none of the therapeutic suggestions have made much difference. In the past few days we’ve started giving her a sippy cup, and that has gone really well. She’s a messy eater at the moment, but hey give a baby a break, right?

Her counts have been stable, and her platelets are into the normal range on her own. Dr. P made the joke yesterday that she could start donating platelets now. We’re thinking we’ll hold off on that, but he’ll be here all week folks!

WBC counts are hanging around in the 2’s and 3’s, and Zoe is getting her “G” (GCSF or cell growth medication) about once a week now. The feeling is that she will begin to produce her own WBC any time in sufficient abundance not to need it, but whenever the count goes below 3 she gets a dose. Hemoglobin, minerals, everything else are looking great. The only thing she has needed since discharge continues to be the GCSF.


Day +50: The Med Routine

Things are settling out here as we work out our routines. Now that we’re out of the hospital and in each other’s hair again, everything seems at ocne more hectic and more pleasant — even the unpleasantries.

Zoe has a long routine that we go through each day to maintain the meds she needs. It is very prescribed and intricate for a lay person I’d say, it’s taken us a few days to adjust to everything we need to manage.

Right now, Zoe is still on TPN or IV nutrition, which she’ll stay on until she is eating enough milk or solids to no longer need it. That may be a few weeks, though we are working on it. She is also taking a variety of medications for a variety of purposes, all of which are monitored and adjusted with daily lab (blood) draws that we draw and take in to the hospital.

We were going in every day for the first while, but we’re already on an alternating schedule due to Zoe’s pretty amazing resilience. She has not yet needed any infusions — platelets, blood, GCSF for her WBC — and that’s given the doctors confidence that she is stable enough not to need to come in each day. Her WBC count is holding out around 3.4, and they are resisting giving her any cell growth medication at all in hopes that by stressing her immune system a little, she might begin to produce them herself more quickly.

Here’s what our schedule looks like at the moment on a clinic day:

The Situation

7:30-8am: Zoe’s alarms go off for her TPN and Lipids, which run overnight for 12 hours each night. We flush her lines with Saline and lock them with Heparin, which prevents them from clotting when not in use.

8:15: Blood draws, between 1 and 3 tubes depending on which tests she needs; these have to be dropped off at the hospital within a few hours, but we try to get them in by 9am to ensure the results are back by the time we’re in clinic.

Packing up

8:30: Zoe’s Tacrolimus infusion starts, which runs over 2 hours; this is an immuno-suppressant to keep her immune system from revving up too much, she receives medications to help her fight off infections while it’s kept suppressed. She also receives her morning Hydrocortisone infusion, which is given by hand over 5minutes.

9am: Morning oral meds. Typically 3-5 meds, including Cellcept(to prevent graft rejection), Amlodipine (for blood pressure), Vfend (to prevent infection), and Raniditine (for reflux while her GI tract heals).

Have food will travel

11am: Clinic time. Visits vary widely in length, Mondays being the longest due to our seeing the primary physician that day and getting IVIG(antibodies). Other days we may be out in an hour after they’ve checked her, if everything is looking good with her blood tests and vitals.

2pm: Second Hydrocortisone infusion of the day.

5-6pm: The daily med delivery arrives, bringing everything from syringes to batteries to actual medications in fridge packs.

6pm: The evening prep starts for infusions and TPN. The IV nutrition has to be loaded into the pumps to run overnight, and injected with vitamins. The vitamins lose their potency in the light, so they are injected just prior to administration.

6:30-7pm: Evening infusions. Zoe gets a third Hydrocortisone infusion over 5minutes, Zofran(for her stomach) over 5minutes, and we load her TPN & Lipids for the night. She also starts her second dose of Tacrolimus of the day around this time.

7:30-8pm: Evening oral meds. Usually the same as morning, though a couple are only once a day.

9pm: Tacrolimus is complete, and Zoe is asleep for the night. She typically sleeps through, with perhaps one wake-up at night.

Each of the infusions requires 5ml of saline before and after, then a 3ml Heparin to lock the line. This means Zoe goes through roughly 15 saline syringes per day, not to mention the liquid from the infusions themselves and the heparin. It’s an amazing amount of fluid for her size, good thing those kidneys held up.

Zoe & Maya Playing

Stir in one 3 year old and shake vigorously, and we have a pretty interesting schedule right now. As time goes on, we’ll cut the TPN & Lipids completely, vastly simplifying things.  We’ll hope to cut out other meds, and eventually get down to only the Tacrolimus 2x a day, if everything continues to proceed as planned.

Day +47: Outpatient Daze

Note: A bit of a cute picture round-up today, I had a few more inpatient pictures to get up before we move on.

Where to begin? So much has happened the past few days it seems like. It feels very similar to our first experience of leaving the hospital to care for Zoe for obvious reasons, however things are much more complicated this time around. We’re managing her IV pumps, oral meds, blood draws and cap/dressing changes now.

Hats handmade and given to the kids, most of whom lose their hair

Our first night out was a whirlwind. We left the hospital, headed to our apartment a short distance away, and began unpacking all of our things. We were scheduled for an outpatient nurse to come check on us and supervise our first night’s medical routines, but she arrived 4 hours earlier than we had been expecting, almost immediately after we arrived home. Add to it that we were exhausted and she was, well, a bit of a Drill Sergeant, and the evening was bumpier than it could have been.

We had just been lying down for a nap, Zoe was asleep, Maya was asleep, and Michelle and I wanted nothing more than to sleep — when the knock came. Grizzly, our dog, was still here at that point, and he got up to see who was there. Before I could get the door fully open, I heard, “is that a dog I hear?!”. Uh oh.

“Yes, but he’s friendly,” I said. “He’s going to have to go away,” she replies. So I shut the door, shuffle Grizzly off to a bedroom and return. No big deal.

We gather into the (only) central room to get acquainted. She asks us where our supplies are, and we explain that we haven’t had a chance to get to the store to buy a storage chest, we were expecting her later, so they’re still boxed up. This is met with what I can only describe as disdain. Clearly we have failed already.

We’re told that they would never schedule a visit as late as we’d been expecting, which is probably true. Unfortunately it doesn’t change what we were told, and not knowing better we’re now firmly confused as to where we should be.

We start to lay out our supplies on the table to make sure we have everything, when suddenly Maya comes charging in from the other room “flying” (she’s a big Tinkerbell fan) in her fairy costume, and bumps something that was left on a chair onto the floor.

“You’re going to have to control her! Do you have any Grandparents?! Can you call someone?”

Were I quicker with the wit, I would have explained that we keep them in the pantry nearby for just such emergencies, which seemed to be the expectation. Instead I replied that, yes, we do have my parents nearby and yes, I can call them. God help us if we hadn’t had someone nearby on call, who knows what might have come of our toddler.

Our gear all laid out, we begin to prep. It’s painful, and bumpy, and even though we have had training with demonstration gear we haven’t actually drawn the medicine before, so it takes a little learning. Each mistake is met with a look of disapproval as, though she sees us making it, she allows it to continue. In one case she pointed to a small puddle of medicine on the table mistakenly over-primed from the tubing, glanced at Michelle, and made a remark to the effect of, “now you know”. I am glad there were no sharp objects close by at the point, I fear we would have been needing a new nurse (I kid!).

By the end of the approximately 3 hour visit, we have prepped the IV nutrition and lipids, injected vitamins into them, started 3 timed medications through Zoe’s lines, flushed the lines repeatedly with saline consuming roughly 30 alcohol wipe packets, and given her her two direct slow-injection medicines. I would estimate we also shortened our lives by a month, give or take, just based on the stress. But who’s counting.

Zoe with her primary nurse.

Thankfully Zoe and Maya slept well that first night, and our two subsequent visits have been performed by patient, sane nursing staff who helped us get comfortable with the process of caring for a child fresh out of the hospital. Grizzly has not been “sent to live on a farm”, but has been packed off just the same to our actual home with his Grandad, who is the one who has been doting on him the most these past months anyway. I was sad to see him go, but he is much happier with a yard and his familiar sleeping spots.

We made it through the weekend, veering from one crisis to the next. We would begin a treatment (nervously, fearing any moment we’d cross a wire and blow up our baby) then realize we needed to do something else immediately after and swerve to that. Each night we collapsed on the couch, exhausted, nevertheless happy to be together once again, stressful as it was.

Zoe's new onesie, compliments of her primary nurse.

Each day has gotten better and we’re slowly creating a new schedule of duties to manage things. The important thing is that Zoe is doing great and Maya is happy to have us both back again. Soon we’ll be old pro’s at these new things, and the stress will dissipate.

Zoe’s labs have been good, she has not yet needed cell growth factor again (GCSF), nor has she needed platelets, blood products, or minerals. It’s astounding, we would absolutely have expected her to need them these first few days. She has also begun to drink her milk again very happily — she seems just as thrilled to be eating as we are to see it.