January 24, 2011 - 10 PM

What are the measures of improvement for Sarah?  Well, her visitors over the last two days have been impressed with how much better she looks (colors, eyes, spirit..).  She's taken several long walks, which she requests herself before anyone can suggest it.  Gastronomically-speaking she's had all of an egg salad wrap for lunch and 3/4 of a cheeseburger for dinner along with a whole Strawberry nutrition shake (Ensure plus a little ice cream).  She's been productive on Facebook, written two short essays, and has read through a multitude of get well wishes on her wall.  (Thank all of you who post, Sarah is now reading them, but she says she doesn't think she can reply to everyone - I am sure you understand.)  Temperatures are normal, blood cultures are negative, her new parts (valve and pacemaker) are working properly.  We have to be close to a return home!

What remains?  Well, one goal was good food intake - hopefully that will continue tomorrow, and become a goal attained.  Her Coumadin pills have to reach a level that achieves the right degree of blood thinning (anticoagulation) without overdoing it.  We have a little way to go with that still.  She is still having some diarrhea, but maybe a little less than yesterday.  Pain remains a confusing and troubling factor.  She has a variety of very real sources of pain related to this illness (chest wall, right knee, throat), she has some pain as a consequence of her treatment (yeast infection in her throat), she has some aches and pains related to an uncomfortable hospital bed (back pain, neck pain), and her head aches at times because whose wouldn't?  We are still puzzled by the burning, stabbing, sometimes pressing chest pain.  It doesn't seem like straightforward heart burn though Maalox helps.  It also doesn't seem like bone or muscle pain related to her incision.  One thought today was esophageal spasm which might explain its episodic quality.  But, probably, armed with a plan and appropriate medications, we could deal with pain management at home if everything else was lining up - in fact it may be be easier to manage in the comfort of our home.

I've noticed that over the past week we have never had the same nurse twice.  Is that just the way nursing coverage happens these days (patients used to have a primary nurse), or have we become the "not it" patient/family?  We try to negotiate the sometimes fine line between being demanding and advocating for Sarah.  When she is in pain, how many minutes of waiting are acceptable after pressing the call button?  When the IV pump alarms are going off, how long should we listen to them before expecting someone to check on the problem in her heparin (IV blood thinner) line?  How do we assure that Sarah has adequate pain control without triggering concerns that we are drug seeking for our daughter (I mean really, Sarah Cooley the drug abuser...)?  Our kids and their friends used to have an amusing routine when some unpleasant task needed doing.  Everyone would quickly put a finger on their nose.  The last one to do so was "it" and would have to carry out the task.  I am picturing a room full of nurses during the shift change with their fingers on their noses when "Who is going to take care of Sarah and her parents?" is asked. ;~)

In the past day or so, Seddon has had the courage to search for more information about Sarah's bug - Staphylococcus lugdunensis.  The information she's found certainly has confirmed the necessity of the drastic measures that Sarah has had to endure.  In some scenarios, the mortality from endocarditis infections with this bug without heart surgery is about 75%.  We will now have to face the eventual day in about two months when she will go off of antibiotics.  There is a small recurrence risk of infection with the same bug and then the mortality rates are just as high.  And what will it be like in the future with every fever or minor illness?  Well, in reality, we are so fortunate that we have these worries ahead of us!