Jun 3 – It has been a long weekend.  I don’t know how else to say it.  This is three weekends now that we have been pretty much incapacitated and it gets long.  We appreciate the email, cards, visits – but this just gets long.  We will be ok but hospital living is a hard thing.  Doctors said today that they are quite content in sending R home with her milrinone infuser.  That seems to be the way to go.  Their frustration (and ours) is with the concern that her I/Os (ins/outs) are not syncing up the way the doctors think they should sync up.  In other words, if R has a certain body weight (they weigh her every morning), then takes in a certain amount of fluid (I) during the day, then is given a certain amount of diuretic, and then gets rid of a certain amount of fluid (O), there should be some general and reasonable relationship (that is somewhat predictable) between the Is and Os and her body weight going up or down.  In R’s case, it seems mostly random.  She may offload a considerable amount of fluid one day but doctors don’t see the corresponding loss in body weight next morning.  R is now on something of a restricted liquid input diet (liquids, soups, pear juice, etc.) to see if she has possibly been taking on too much liquid somehow while in the hospital.  Big picture – until this balance is struck between meds and fluids I/O and body weight in a predictable fashion then staff will have to keep tinkering.  The down side of lots of fluid off-loading is the loss of potassium and iron.  Again, today, she was given hefty doses of K and Fe as a result of the large amount of fluid loss.  Anyway, it all gets a bit tiring and depressing and sad – every six hours nurses main-line more of this and less of that and on and on through the day and night.  Tonight, they are not giving her any diuretics and want to see tomorrow what the restricted liquid diet will do 12 – 18 hours from having started now.  Needless to say, this has to all be balanced out before we can think of getting her home. So, this week will be – possibly – a long week.  We hope that we can all hit on the right combination then move on.  No other word on transplant or procedures this weekend.  After signing last Fri, she/we are on the list now and are waiting… 

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