Quick Max Update

It’s been a weekend of anxiety, frustration and deep sadness. It is so difficult to grasp the idea of another open-heart procedure especially when we look at Max and he seems to be doing so well, who would have imagined that this new monster was lurking inside? What makes it worse is that we still don’t know a whole lot of specifics: the when, the where, and the how. If I’ve learned nothing about myself these last eight years I’ve learned that I deal better with concrete facts and solid action plans, I really suck at the abstract. The abstract of waiting and hoping and praying that everything works out for the best, Max’s best because he deserves nothing less that the absolute best we (his parents and his doctors) can give him.

What we do know so far is outlined (albeit in very medical terms but I hope you can get the picture) in the e-mail I received this morning from our genetics counselor, otherwise known as my life-line, Gretchen:


… we reviewed the images this morning, and my understanding is that even though there is mod-severe leakage which may be subjectively worse, the left ventricular size is only at the upper limit of normal and significantly reduced from the echo in 2008. LV function is also much better than in 2008.

 He (our doctor) wanted to switch from Losartan to Avapro, so I'll have our PA give you a call re: this switch. It is still an ARB, just a different med within the class. He also recommended echo in 3-4 months, instead of six.


And, although we have never, ever had doubt that Hopkins was the best place in the world for Max my e-mail exchange with Gretchen continued like this:


Big deep breath (does she know me or what?)--
 Re: Medications:--Avapro has a higher dosage schedule as an ARB, so just switching within classes of meds, so that switch should be incredibly well tolerated and not a big deal at all.

In terms of the heart…. we'll make sure there is a good plan and that everyone is on the same page. Please also feel free to call Dr. Dietz on his cell. Today is Passover, so he went home after seeing a patient, but please call if you are anxious! (Where in the world do you find a doctor willing to talk to an emotional wreck of a mother on a major holiday?)

Everyone has Max's best interest at the forefront of their care, so I think you can definitely trust that!!


With support like this how can we go wrong? As Gretchen so astutely pointed out I just need to keep breathing calmly in and out...and read every piece of medical literature on the topic known to man.

Thanks for checking in and keep the good thoughts and prayers coming!