Week Twenty-nine.....Taking It On the Road.....

This past weekend Babygirl and I took a road trip to New York City to visit her big sister.  It's about a four hour drive one way.  The purpose of the visit was to take Big Sis some furniture, since her first "Big Girl" job hasn't yielded a paycheck yet, and she's tired of sitting on the floor to watch TV!  So a good friend donated a couch, and we loaded up a bookshelf with it in the back of the big van and off we went.

Now in order to do this type of thing we have to plan a bit.  We try really hard to be compliant with our baby's medical care.  After all, if we aren't compliant, they'll refuse to give her a new kidney - no point in giving them to people who can't or won't follow directions!  The dialysis machine is pretty fragile, not to mention that it's surprisingly heavy for its size, so I have no desire to take it along anywhere.  So that takes us back to manual gravity dialysis, more commonly known as Continuous Ambulatory Peritoneal Dialysis (CAPD).

CAPD can be done a couple of different ways, but as the title suggests, it is meant to be done while the patient is up and about, and it is supposed to run all the time.  In our case, we use an IV pole with a scale attached to measure 1200 cc's of fluid into Babygirl's PD catheter.  Once the fluid is in, she gets disconnected from the pole and bag and can go whereever she wants and do whatever she wants.  After an hour and a half she comes back, gets hooked up to drain out THAT fluid, fresh fluid is put in, and we repeat the cycle five or six times.  This adds up to a lot of time!  The dialysis machine does exactly the same thing, but it does it automatically while she sleeps.

So for this road trip, I filled her up with fluid while we were packing.  She was due for her next exchange 45 minutes after we hit the road, so we pulled off into a truck stop.  We have a big van, usually 8 passenger (could be 11) but right now all the benches are out so we can transport the couch.  but hey! couches are comfy, so we set up shop in the back of the van.  Up goes the IV pole, out comes the dialysis fluid exchange system.  And THAT's when I realized that I forgot ONE little detail. 

The dialysis machine has a warmer.  The five liter bags that we use with the machine are heated to body temperature automatically, and pretty efficiently.  I'm supposed to heat travel bags before I go, using ordinary heating pads (which are incredibly INefficient) and store them in an insulated bag to keep them warm. And I forgot.  Now it's not actually harmful to use cool fluid any more than it is harmful to drink ice water.  But it is, according to Babygirl, uncomfortable. We learned THAT on our last road trip.  So I felt pretty bad about forgetting, especially since we were committed to doing six exchanges!  Well, no going back now!  Let's do it.

God bless Babygirl.  She dealt with the cold fluid with good grace and a hot drink from the truck stop.  But do you remember me mentioning her practical common sense?  "Mom, can we put the next bag near the heater back there?"  Well, DUH.  Of course we can.  Actually, I put the next two bags in front of the heat vent, packed my coat over them, and by the time we were due for another exchange they were nice and warm! 

I'm not sure, but I don't think many people manage four exchanges on one road trip, each in a different state each time.  Oh, and by the way - you get some interesting double-takes from people when the look into your lighted van and see a kid hooked to an IV pole.

DeeDee