Week Forty-two - A New Life.......

We are still stunned. 

We never really expected to get a new kidney so quickly.  Both transplant teams told us to expect long waits, although the Philadelphia team was more optimistic.  Right now we are at our home-away-from-home with my sister-in-law near Philly.

Gone are the nights of fighting the dialysis machine.  Babygirl has been sleeping a LOT, and I don't think it is just recovery from major surgery.  Six months of interrupted sleep have taken their toll on all of us, but on her most of all.  She had learned to cope, clearly, but she was awakened twice per night by pain, each night from August 22nd to February 2nd.  That's a long time for a child to be expected to think that pain is normal.

Gone are the mealtime pills, the bigger-than-a-prenatal-vitamin pair.  We'll have to collect the leftover supplies from school, her  best friend's house, and the Pastor's pocket.

Gone the weekly shots of Erythropoetin, since the new kidney makes its own supply.  This means no anemia, and less fatigue.

Gone will be the severe gym restrictions.

Gone, the monthly trips to the dialysis team.  We'll miss the team but not the trips!

All of this is unimaginably fabulous.

And here's what we get instead:

Babygirl is on three anti-rejection meds (eighteen pills per day), one antiviral (two pills), one antibiotic (one pill), and one antifungal (swish and swallow four times daily).  She is on one medication for high blood pressure (one pill), one antacid (one pill), and her usual asthma meds (one pill and an inhaler). The majority of this is on a twice daily schedule, but it MUST be done every 12 hours without fail, for the rest of her life. We have already signed up at MyMedSchedule.com.  They keep track of your medications, remind you to call for refills, and send us four text messages daily to remind us to remind Babygirl to take her meds. It's free,and anyone can use this service. Hubby and I are thinking about using it for our own meds!

For the next six weeks, Babygirl is off school.  I will be sending them an email to let them know we need a tutor starting next week.  Babygirl can't attend church, go to the mall, eat at a restaurant or hang out with friends.  We will be seeing the transplant team Mondays and Fridays, and we can't take the train. The Philly transplant team is negotiating with the local team to see if they will take on one of these visits each week.  If not, we will clock over 700 miles per week in travel.  If they do, it will drop to 500.  God bless Rhonda the Honda, our 1995 Odyssey.  Reliability has nothing to do with age!

If all goes well, the visits drop to weekly, then monthly.  At the six month mark we drop the antiviral, and I think the antifungal.  The antibiotic goes bye-bye in a year, and the doses on the immune suppressants will decrease over time as well.

Adjusting to the changes doesn't seem too daunting this week.  After all, Hubby and I are both here, both off work, and able to be 100% attentive and vigilant.  Next week we will both return to work.  Babygirl will be home with her older sister.  We will work on the new life schedule.  We will do, as always, whatever it takes.

For heaven's sake, don't take us off your prayer lists yet! And sign your organ donor cards.

DeeDee