Week Seventeen - The First Surgery

Monday morning we got up before 5 AM to leave for the local center to have the dialysis port inserted.  The general idea of the proceedure is to install a catheter into the peritoneum.  This is done laparoscopically, through the belly button and 2 other small incisions.  The tube is then tunneled through the abdomenal muscles into the layer between the muscles and the skin, exiting opposite the belly button on the left side. The most painful part of this is recovering from the discomfort of making that tunnel.  Or so I thought.

In the preop area we ran into the first of the "right-hand-doesn't-know-what-the-left-is-doing" mentality that we have come to expect from our team at this center.  None of the labs drawn at the big center had made their way to the surgeons, even though we had specifically asked out local people to make sure they did.  I, of course, had the results memorized, but no self-respecting anaestesiologist would take such things for granted, so we were held up a bit while they ran some STAT blood work.  Thankfully they got the blood when they inserted the IV, so no second stick was needed.  Other than that, everything ran  on time and as expected, and Babygirl doesn't remember a thing about it all.

We were taken to a lovely pediatric ward, actually in a separate (but connected) hospital. To be as kind as possible, the nurses were attentive and kind, although not ONE of them appeared to have read her chart.  No one knew what meds she was on - we were asked over and over and over again about the dosages of some of them.  We had words with the doctor about the plan for immediate dialysis, an how uncomfortable we were with proceeding without letting the tube heal into place.  He, and the residents all hammered home that if we DIDN'T do this, the tube might block up as part of the healing process.  They were VERY convincing - at one point my husband looked at me and said, "Are you sure you aren't just being stubborn?"  Now, that might sound unkind, but I AM stubborn, and sometimes I need talking down from an unreasonable stance on things, and he was trying to see what was going on in my head.  But at some point, the fight goes out of you.  The kid is already suffering, you've been up since before dawn, and a united front of experts in a field you know nothing about is facing you down.

So okay.  Start it.  But I'm watching, and I still think it's a bad idea.

They were supposed to start around 1 o'clock, which would have finished at 9 and given us the night off.  It took until 9 to get set up and started (right-hand/left-hand syndrome).  The basic principle is this:  you use a machine pump to put clear fluid into the kid's belly via the port. They used a low volume, 500 cc's (about 2 cans of sprite in volume).  It takes about 10 minutes to pump in the fluid.  The fluid sits in the belly, osmotically pulling toxins from the bloodstream.  Half an hour later, the machine sucks the fluid out into a waste bag.  And THERE is where we ran into some little problems.

Putting the fluid in feels weird and is uncomfortable.  No problem just letting it sit there.  But pumping it out caused our baby SEVERE pain.  SCREAMING pain.  During the day before the dialysis started, she got IV morpine about every 5 hours and was comfortable.  During the night she got it every 2, with rescue doses as needed, and was crying every time the drain cycle came on.  And to make it worse, the drain cycle wasn't able to drain out all of the fluid so it took 4 times longer than it should. And it cycles like this EIGHT times. And, frighteningly, the dialysis fluid started to leak through her skin around the catheter - a sure sign that we DO have a potential germ highway from inside to out.

Finally it was done.  We all collapsed and slept a little.  And then they said to start again at noon, finish at 6, and then go home.  She was clearly very comfortable at that point, but hubby and I KNEW this wasn't going to go well.  I looked at them and said, "ONE cycle, to keep the catheter open.  And if it hurts I am pulling the plug on the damned machine and walking out." 

Holy God.  As bad as it hurt the first time, it was a thousand times worse the second.  Some genius switched her to oral pain meds right before they started after telling us that they would keep the IV morpine going for the duration of the dialysis.  And that first cycle WOULD NOT drain.  The screaming lasted for well over an hour.  If I had had any idea of whether it was safe or not to leave that fluid in there I WOULD have pulled the plug.  And when most of the fluid was out, I refused further treatment.  We were home a little after dinnertime, with dialysis fluid still leaking out of her skin.

Lord.  Please.

And we have dialysis training next week.

DeeDee