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:
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.
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.