Thursday, September 19, 2013

Year Three, Week 23 - If Visits Were Symphony.....

Today was Babygirl's first visit with the Adolescent Clinic in Nephrology. 

First, the Prelude:

Babygirl's school Open House was last evening.  It started a 6:30.  We moved from classroom to classroom every nine minutes, going from the first to fifth floors.  We met up with Citygirl's favorite English teacher, now on Babygirl's favorite list.  We met the art teacher who didn't seem to mind giving Babygirl a low grade on a project that she couldn't finish because the smell of the marker was triggering a headache (NOT going to be a problem going forward, and Babygirl can finish the project with paint or black colored pencil for regrading).  I joined the PTA (made a donation, plan to do nothing, their second-least favorite kind of mom). 

We were on the highway at 8:30 PM and arrived around 11.  What with one thing and another, I was asleep at midnight and up at 6 (I woke up at 4 thinking it was time to get up.  You can not imagine how satisfying it was to park myself back under the covers!). 

Traffic to the city sucked.  There really is no better word for it.  So our intended 7:30 finish-up-the-study meeting with Nina, the study coordinator, had to be fit in among all of the other visits that are part of Adolescent Clinic.

 First Movement, Allegro:

Nurse.  Lab. Fill out Nina's forms over breakfast.  Nurse Practitioner.  Nina. 

Second Movement, Presto con Moto:

OOOPPPSSS - almost 9:30 - make a dash up the 48 steps, through the long bridge to the other building, elevator to 6 and sign in for Neurology.

Third Movement, Adagio con Fermata:

And wait.  And wait.  And wait.  We were the ONLY patient on the doc's schedule, and he is so accustomed to NOT having patients on Thursday that he thought the page he received about having one was in error.  Seriously.  When we finally caught up to him, he was exceptionally pleased with Babygirl's progress:  Only two notable headaches in the last two months.  He gave us advice about what to do for them, and sent us on our way, recheck in 6 months.

Fourth Movement, Affrettando:

Back to Nephrology:  Transplant pharmacist. Pop-in greeting from Dr. B.  Residents.  Nurse Practitioner #2.  Social worker.  Psychiatrist.  And finally, the attending physician, Dr. A. Oh, and Nina, here and there, trying to finish her study paperwork, taking back our electronic pill sorter, paying Babygirl her participation fee and enrolling us in the next phase of the study.

Babygirl is still pretty anemic.  Dr. A is thinking she needs to go on erythropoietin again.  I (once again, for about the dozenth time, suggested that perhaps Babygirl has Thalassemia minor (an inherited form of blood malproduction that leads to benign chronic anemia)).  Hmmm, interesting idea, she says.  Wouldn't need to treat with erythropoietin, then, she says.  Yeah, I say.  So a call is going forth (at long last) to hematology.  We will either see them, or not, at their discretion.  I'm guessing it'll be a go.

She still has too much acid.  Double the bicarbonate.


On our way out we were snagged by the Hypertension Clinic coordinator, who signed Babygirl up to be seen in THAT clinic on our next visit, warning us ahead of time that THAT clinic takes four hours each time and includes labs, an echocardiogram, and a visit from Nephrology inside of that clinic (so she doesn't have to meet separately with the Transplant Team.

We didn't leave CHOP until 1:30.   Next time will likely take as long if not more so (especially if we tack on hematology).  The time AFTER that will be back with the Adolescent Clinic, and I will be invited to hang out in the waiting room, no longer needed in back.

The Postlude:

The kidney is doing fine. See you in three months.  Seriously, there has to be a simpler way to tell us that.


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