Saturday, April 4, 2015

A Long Day Waiting.....

In my experience there are few things more exhausting than sitting and waiting with a sick child, and yesterday was all about the waiting.  We had no specific scheduled time in the OR for the biopsy, so our orders were to stay 'home' in Ambler and wait for them to call us in.  Babygirl took her meds with a little water (minus all the vitamin-y things) at 7 AM as usual, got dressed and packed, and waited.  The call came at 9:09:  Come on in!

The traffic at that hour isn't too terrible, so we had no trouble making the 10:30 arrival time.  The instructions for finding surgery were given over the phone by a recording:  Go to the THIRD floor of the Wood Center, which is the FOURTH floor of the main hospital.  Oh, um, okay, that's clear, kind of.  We accomplished this, went to the pre-op area for a repeat pregnancy test (in case she managed to get pregnant since the test they did yesterday in the clinic!) and then we waited. 

Doctors and nurses came and went.  The biopsy site was marked (right lower abdomen, where the transplanted kidney lies).  We answered the same questions multiple times:  When did you eat last?  Drink?  Which pills did you take?  What time?  One nurse questioned the consent, as it didn't specifically say 'right transplanted kidney.'  Since she has but one transplanted kidney that felt redundant to me, but there are kids with more than one so I saw the point. 

But the entire time the clock is ticking.  And that wouldn't matter except that I know that that tissue specimen needs to be in the pathology lab by 2 PM in order for us to have any results available by the end of the day.  Finally, at 1:10 they had her drink some happy juice and wheeled her down the hall. 

I had had a couple of cups of coffee and a bagel at home at 6 AM, before Babygirl got up.  By the time they wheeled her away I was pretty desperately thirsty (I hate eating and drinking in front of her when she's not allowed - it's silly, but it's me).  I made my first run for the stairs, grabbing a water bottle (which I finished before I hit the check out), a PBJ on wheat and a coffee.  I made the run back up the steps (add an extra 22 - we were up another flight, so 60 total) and went back to the surgery waiting room.  

The surgery waiting room was crowded, full to the gills with people speaking at least 5 languages in addition to English, all buzzing with nervous energy or flat-out fear.  I liked it better there when we were alone at 2 AM three years ago waiting for them to finish Babygirl's transplant.  At least then it was just OUR nervous energy.

The procedure itself is very brief, so she was in recovery shortly after 2, and I joined her there.  They had managed to do the procedure under sedation, so she was already pretty alert, complaining of hunger and thirst.  She ate graham crackers and apple juice and fell asleep.  We waited for a room to open up on the nephrology floor.  She continued getting IV fluids, and drank more intermittently and then, of course....she had to pee.

Following a kidney biopsy you need to remain as flat as possible for 8 hours with a pressure dressing over the needle site to prevent bleeding.  Getting up to go to the bathroom is not on the list of things that are allowed.  For the sake of Babygirl's dignity I'll skip the details but in the end the doctors lost and she won, but not until we arrived at our room on the floor, which wasn't until after 7 PM.  We were the last people in the recovery room.  Rooms were tight, apparently.  Or there was the usual 3-hour delay in discharge paperwork for somebody else up there.  The recovery room wasn't a bad place to hang out.  I had a comfy glider rocker, entertaining conversation with the nurses, and Babygirl slept a lot.  At one point I made another run to the cafeteria for food for both of us (60 more steps!). 

I did some serious rule-breaking, though.  As the clock ticked toward the time for her evening medications, I considered how long it takes for the floor admission process, for orders to go in, and for meds to come up.  Last time she got her transplant meds at nearly 10 PM, three hours late, which led to a misreading of results on the levels of her medications in the next mornings' blood work.  Since we are here fighting for the kidney it seems counterproductive to be missing doses of critical medications, so....I gave her her 7 PM pills.

It is always easier to get forgiveness than permission.  And quite frankly, although the admitting nurse didn't say so in so many words, she knew we made her job a LOT easier.  And in exchange, she bullied the doctors into putting in diet orders for Babygirl so she could order a meal 10 minutes before room service closed. 

Admitting orders weren't put in until nearly 9:30.  She wouldn't have gotten her medications until about 11.  No regrets.  We both slept like the dead.

Preliminary biopsy reports show that there are no large deposits of antibodies in the kidney.  And in morning rounds today the attending nephrologist (I'm sure I didn't get his name right - it simply CAN'T be Breinschwagger, can it?) perked up his ears when I said (for the one hundredth time!) "sore throat for about 8 weeks now").  Questions flew:  Strep tested?  Yes, twice, positive once and treated and cultured here three weeks ago after treatment and negative.  Viral studies?  Yes, historically because of her immune status but not recently.  So suddenly someone is thinking that maybe her acute illness and her kidney's unhappiness are connected - somebody besides me, that is - so they are doing extra blood tests. 

None of these tests will be available today, and the final biopsy reports will not be available until Monday or Tuesday.  They aren't going to keep us here for these.  They are going to make us wait for today's CBC to make sure she isn't bleeding from the biopsy, and today's creatinine before deciding to send us home, but the general plan is for discharge this afternoon.



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