Day +15: Hospital Fun and Games

I arrived at the hospital at 7:30 and was once again able to edge into Sile's room just ahead of Dr. Nakamura.  His report was similar to all the days before - pleased with the progress of Sile's counts (whites 2.7 and platelets 110) and dismayed at her pain and distress.  He mentioned that the two consultants - pain and gastroenterology - would come by during the day and he would be in close contact with them as the treatment plan develops.

Shortly after Nakamura left Sile was sleeping soundly and I took off to Pasadena for a swim and lunch (chicken kebabs from Janet's Mediterranean Cafe - delicious, both the swim and the kebabs).  I returned to see that two of the three things on my agenda for Sile that day had been accomplished in my absence - a shower and a walk in the halls - and Sile was resting comfortably.  

Not for long, however.  Dr. Lal the gastroenterologist returned around 12:30.  After a few questions and quick examination of Sile he decided to order an endoscopy and sigmoidoscopy to - literally - take a look at what's going on in Sile's gut.  I asked when this would take place and Dr. Lal said, "Well, he has someone at 1, so 2 o'clock".  We knew this test was a possibility since we had discussed it the day before; nonetheless it was startling to switch so quickly from "maybe we'll do this" to "it's happening in an hour".

Sile was nervous.  "I'm a big wuss" she said to Brenda, the nurse for the procedure.  "Not to worry," Brenda replied.  "Wusses are my speciality."  Sile handled things like a champ and was back resting in the room by 5.  Results tomorrow.

The only problem was a failure of communication from the nursing staff following the procedure.  I had accompanied Sile downstairs into the preparation area.  When they wheeled her off I was escorted to a waiting room and told that someone would fetch me when Sile was in recovery in about an hour.  I think you can guess where this is going - no one ever showed and after two hours (during which I admit to feeling nervous myself) I finally tracked down someone who told me that Sile was already back upstairs.  First bit of sloppiness I've seen at City of Hope.  

We had an interesting conversation today with the pain specialist Dr. van Zyl about sleep in the hospital.  She told us that studies have shown that even one night without uninterrupted sleep will elevate a patient's pain levels and have a negative impact on healing.  And yet in the hospital, where all our acute care takes place, things are set up to make sure sleep is interrupted.  Dr. van Zyl said she can guarantee that anyone coming into the hospital with chronic pain of some kind is going to experience worse pain simply by being there.  I  have certainly seen how sleep deprivation has negatively impacted Sile. 

Some of the interruptions are due to medical interventions (such as the midnight blood draw!) but the worst culprit is the IV pump:

Sile has a constant stream of 4 IVs.  When one gets an air bubble or other problem it beeps.  Loudly and obnoxiously.  It is then necessary for SILE to call the nurse's station to summon a nurse to come and set things right.  This happens between 3 and 6 times every night.  

Dr. van Zyl told us that the wireless technology to put the alarm at the nurse's station rather than in the patient's room exists.  But it is very expensive, and she doesn't see the hospital springing for it any time soon, despite the fact that their own doctors believe there is little that could improve medical outcomes more.   Frustrating for all.  

Let me close with a big thank you to all of you have have written cards, letters, emails and texts to Sile.  "Mail time" is always something she looks forward to and something that buoys her spirits.  We are very grateful.