Our first full day at home and it’s almost like we never left. Almost. Not sure yet if Addison remembers her home, but she seems to be settling in. Aaron and I definitely appreciate being able to sleep in our own bed! Before Addison got sick, we were just getting into a routine with a newborn baby, and now we are slowly getting back to a routine, though a little bit different than before. I call it our ‘new reality’.
Here is what a typical 24 hours in our house looks like right now:
6:30am – feeding time, 75ml of special formula; first we try bottle-feeding then whatever she doesn’t take goes through the tube
8:00am – medications: Tacrolimus (anti-rejection), Septra (antibiotic 3x weekly), Ranitidine (prevents reflux and protects stomach from Prednisone), Nystatin (anti-fungal)
9:30am – feeding time
10:00am – medications: Bumetanide (diuretic to protect kidneys), Levetiracetam (anti-seizure), Prednisone (anti-rejection)
12:00pm – medications: magnesium, Vit D, Nystatin
12:30pm – feeding time
3:30pm – feeding time
4:00pm – medication: Nystatin
6:30pm – feeding time
8:00pm – medications: Tacrolimus, Azathioprine (anti-rejection), Ranitidine, Nystatin
9:00pm – bath time
9:30pm – feeding time
10:00pm – medications: Levetiracetam
12:30am – feeding time
3:30am – feeding time
On top of this, we have a standing Wednesday morning appointment at Children’s Hospital for Transplant Clinic. On those days, we will be at the hospital at 7:45am for Addison’s blood tests, then to the Cardiac Unit for ECG, maybe an X-ray if ordered, and on to the Transplant Clinic.
Right now, the dietitian wants Addison to get her weight up as quickly as possible. She is back to her pre-hospital weight, but she has basically lost 4 weeks of growth. That’s why we have to feed her every 3 hours. The special formula she is on for her chylothorax isn’t quite finished yet…she will take it until Sunday and on Monday, we will switch back to breast milk. Addison is getting much better at taking her food through the bottle, but it isn’t enough yet. Until she can bottle-feed entirely on her own, the tube will have to stay. We are hoping that will only be a few weeks at the most.
As for the long list of medications, already the doctors have started tapering her drugs. Really, it was even longer just a few days ago! Her Tacrolimus levels are the most important for now and once she can maintain a constant therapeutic level in her blood, the Prednisone will go (along with the Prednisone-related drugs such as Ranitidine). The anti-seizure meds are precautionary and should be for only 2-3 months. By 6 months, Addison should be on just one or two anti-rejection medications.
There are other potential complications with transplant patients…for example, when Addison gets a cold, she will be more ill than other kids. If she gets chicken pox, she will have to be hospitalized to receive 10 days of anti-viral medication. But for the most part, she will be able to live like any other kid. The next few months to a year are the most difficult – no out of country travel for a year, avoiding crowds indoors for the next 6 months – but nothing we can’t manage!
Elaine, Aaron and Addison