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.