Post-transplant Work-up

Today was Zoe’s 100 day post-transplant “work-up”, which means we shuffled through a long day at the Duke Children’s Hospital clinic subjecting Zoe to the same battery of tests that she received before her transplant. She had an echo-cardiogram, the “scream” test for pulmonary function, full blood draws and x-rays. We did not have to have another CT scan, nor did we have to do the nuclear kidney/liver function test. Zoe’s Creatinine and Bilirubin (markers of kidney and liver function) give us no reason to believe she isn’t recovering or fully recovered from her cyclosporine treatments.

The good news is that everything came back just fine so far. Zoe is a fine screamer, her pulmonary test came back better than it did pre-transplant, her xrays looked fine, and her blood counts were almost all in the normal range. The great news is that she did not need “G”, her WBC count is up to 5.6 on it’s own. She’s gone 2 weeks now without a boost, and the counts went up not down. We’re optimistic this means she’ll never need it again.

The visit felt very much like a cap to our experience at Duke. Most of the same tests, only this time with an eye toward making sure everything is fine so we can go home, rather than being fine so that she can be admitted and subjected to chemotherapy. The feeling was entirely different.

Zoe still has a bit of thrush, but given her newfound love of spitting out her medications, we decided to pursue the nuclear option to clearing it up. They gave her a purple dye-like medication that coats the inside of her mouth and throat and suppresses the thrush. The upside to this is it only takes 3 applications over 3 days, the downside is that it is really strong dye.

It’s permanent on pretty much everything except skin I’m told, so Zoe has to wear a little bib for the next few days, and everything she puts near her mouth will end up purple. As we were finishing up the application of it, the nurse lifted Zoe up to a sitting position a little too quickly and she spit up a bit. In a heroic attempt to save her clothes from the purple menace, I caught the spitup in my hand, and was rewarded with a purple hand for my troubles. The dress still didn’t make it. After that, we put on her bib and I gave up any hopes of joining the secret service.

There was a bluegrass band playing in the lobby for the duration of our visit, giving an interesting soundtrack to our Family Circle trek all over the hospital for our tests. There were definitely more smiles than usual everywhere we went, as a result. All in all, a great day.

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.