Day 26 - Friday, June 1st

There is very little chemo for Ryan this week - mainly steroids and the tests which were done 3 days ago.  The schedule ahead holds more Vincristine on Chemo Day 25 (Sunday), and a spinal tap on chemo Day 30 - a week from today.  Understandably, Ryan would prefer to be out of the hospital, especially when so little is happening. 

Unfortunately, he's getting confusing messages from his physicians.  They rotate hospital weeks, and the doctor who was on earlier this week talked about him going home Sunday.  But no "discharge planning" was taking place to prepare him to go home, so I doubted it would happen.  When his regular doctor returned this evening to tell Ryan about his marrow results (as we were warned earlier, it did still contain cancer cells), Ryan asked about going home on Sunday.  The doctor's preference is to keep the patients admitted for the whole 32 day regimen.  Ryan was very disappointed.

Dr. Rauch is very busy - and when his is on hospital duty he is in very early and stays quite late, seeing his patients multiple times daily.  He told Ryan that he would need to make arrangements for another physician to manage his care when he is discharged.  Of the two other physicians Ryan has seen, one is leaving and the other barely speaks to Ryan.  So my mission for Monday is to advocate for getting a physician Ryan feels comfortable with.

Lessons for physicians: *don't tell a patient he'll go home, then drop the ball  *no matter how brilliant or knowledgeable you are, if you can't communicate with your patients you fall short  *it's important for all members of the team to be on the same page - while you have hundreds of other things to do every day, all the hospitalized patient has to do is think, think, and think some more - hanging on your every word.
Miscommunications can be emotionally devastating for patients.

The physician part of me understands fully what is happening.  There is no absolute for most decisions in medicine.  That's the "art" of it.  Two doctors may have different feelings about providing care on an inpatient versus outpatient basis.  Neither is wrong or right - just different.  But to the patients, it's day and night.  As I tried to explain the different perspectives to Ryan, I realized how difficult it is for the patient. 

Ryan was angry.  Understandably.  And a bit shaken at the possibility - no probability - that he won't have Dr. Rauch caring for him when he leaves the hospital.

And this morning I was angry.  Why didn't the doctor who told him he could go home either make the arrangements or step up to the plate and tell him the had decided against it?  Why did the ER doc in Utah get CTs not only of the head but also of the abdomen and pelvis when Ryan presented with a severe headache, but not get a simple blood count?  Anemia is on the list of causes of headaches - and surely higher on the list at high altitudes.  So he got a $1500 CT scan and not a $10 CBC?  Would diagnosing this a month earlier have made a difference?

Down girl.  They did the best they could.  And how could I care for Ryan if he was in Utah?  Just recognize that it is what it is.  And support Ryan and Sophia as best you can.  It doesn't help anybody if you lose it.

On a more positive note...........

A few angels from my church came by yesterday morning to help me clean out my garage.  These are sisters with whom I had worked in Schoharie after the floods.  I warned them that this may be a similar task!  And they still came!  Now I can walk in my garage, all the Christmas stuff is together, all the camping stuff is together, the grown kids souvenirs are together (awaiting the day I brutally attack each box discarding the junk and shipping the important memorabilia to each of them). 

And the 2 shelving units are assembled - well almost.  Except for the parts that are defective.  So I need to call the company and get them to send replacement parts.  Joy.

Oh, and the washer repairman (national A&E company that services Sears & Maytag) didn't show up during the 5 hour morning window but had a computer call to say he'd be arriving later - during MeiLin's Spelling Bee time.  And when I called to re-schedule the jerk on the line told me I needed to re-schedule 24 hours before the scheduled time and he couldn't re-schedule me.  So I "escalated" (new speak for talking to his supervisor), gave him a lecture on customer service telling him the proper response was, "I'd be happy to re-schedule that for you ma'am", and after several repetitions - each "escalating" in terseness of the tone of my voice - he said (!) "I'll be happy to re-schedule that for you ma'am" & I was able to re-schedule.

Yup - I'm in the anger phase......

"the sun'll come up tomorrow, bet your bottom dollar that tomorrow there'll be sun....."

---Barb