March 26, 2011 - 11 AM

Hopefully, most of you faithful readers of Sarah's blog have moved on by now with the sense that Sarah herself is moving on - and she is.  And, perhaps I should, too.  But, I have to admit, it is a little hard to just put this behind me with so much still in the way of day to day reminders - getting the Coumadin right, the pesky leg wound that won't heal, and the audible click-click of that plastic heart valve that I can hear every time Sarah stands close or gives me a hug.  For those who are still dropping by once in awhile and for those who have in the past, thank you again for your collective good will and concern on Sarah's behalf - it has been a crucial part of her healing (and ours).

And now the news...

Thursday (March 24) Sarah had follow-up visits with her infectious disease people (uneventful) and her cardiologist including an echocardiogram and an EKG.  Sarah continues to have a somewhat rapid heart rate (around 110/min when she is resting), and the reason for this is not clear.  People with Down syndrome are more prone to thyroid problems, so we are going to check on that.  And her echocardiogram continues to show a little bit of inefficiency in a small area of her heart muscle called the apex which is around the bottom tip of her heart (picture the pointy part at the bottom of a valentine).  This may mean, we are told, that that area of muscle was injured by her heart infection, injured by the surgery, or is just still recovering from the surgery.  Something called the ejection fraction is about 50% which may not be bad for someone my age, but is lower than normal for someone Sarah's age - and reflects some inefficiency in how her heart is working.  (What was I saying about it being hard to put this behind me?)  Anyway, Sarah will need to start a new medication (metoprolol - a beta blocker) to see if it will help her heart to heal a little more completely.

Do you remember that little device for home testing of Sarah's blood clotting that we had such a difficult time obtaining?  Well, we have it, but have not yet been able to obtain a result.  Trooper that she is, Sarah has put up with several finger sticks, but we have gotten nothing but "E 5" (error code 5).  Unfortunately, there is no way to troubleshoot this without having a drop of blood.  I have tried to convince Lilly, our wheaten terrier, to volunteer, but she disappears as soon as she sees the device.  So, maybe I will need to be the guinea pig. Sarah's Coumadin dose was falling week to week, but now we have overshot the mark and have had to tweak it back up a bit.  With so many things (diet, other medications, illnesses) that can influence the Coumadin's effect, chasing the dose seems to be more the rule than the exception.

Sarah, like I said, is moving on!  After returning home from her appointments on Thursday, I put her on the 3 PM bus to South Station in Boston where she bought flowers for Levi and for Levi's mother and then caught the 5 PM train to Westborough.  She's spending a long weekend with Levi, and a few medications, a daily dressing change, and a clicking heart valve certainly were not going to get in her way!  You go girl!

2 comments:

  1. Ah, I tried to comment a week ago but goofed up. Clearly this is a case of Nature AND Nurture (and who better then a developmental pediatrician AND clinical geneticist to know?). Given the gift of having you and Seddon as parents, both in raising her and genetically, how could the kids be anything but wonderful!? Just the thought of all of you makes me smile. Brava Sarah!

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