Happy Monthday!

August 16, 2013 at 6:50 PM 1 comment

It was one month ago that Eliana Tova graced us with her presence, and it has been one heck of a month.  Let’s just say that nothing – and we mean NOTHING has gone even close to the way we’d envisioned it.  Nothing. Nada. Zero. Zip.

If you’ve been trying to keep up-to-date it’s been obvious that there haven’t been any updates for the past couple of weeks.  It’s been a hard two weeks, and to give you fair warning, this update isn’t the best we could hope for.

Eliana’s kidneys had been a little on the fritz since the beginning, but the nephrologists (that’s ‘kidney doctors’ to the rest of you) felt that it was probably because of the stress of her early birth and surgery, and that they should improve over time.  They haven’t.  In fact, over the past 7-10 days they’ve headed downhill to the point where they’ve almost completely stopped functioning.

Kidneys don’t get a lot of press, but they’re critical to your health in many ways.  By stripping waste products from blood they help regulate the balance of many important chemicals in your body.  To be blunt, if your kidneys don’t work, neither do you.

So what does this mean?  The only way to move forward at this point is to start Eliana on a course of daily (in-home, eventually) peritoneal dialysis that will replace her kidney function.  If everything goes well the longer-term goal would be a kidney transplant, which probably wouldn’t occur until she’s around 24-30 months old.  But it won’t be easy.  In fact, based on the doctors’ advice and some input from a family that’s been through it, the next few years will be very, very, very, very difficult.

Many of you have been asking how you can help.  We do greatly appreciate the support, even if some of us (..Hank…) aren’t great about taking help sometimes (ever).  But with things unsettled and still changing day by day it’s been a challenge to figure out how to take advantage of the offers.  Since we don’t know what each day will bring it’s hard to know what to ask for or even where we’ll be at any given time.

For those who have asked about making a meal, driving us somewhere, mowing the lawn, etc., don’t go away.  Once Eliana comes home we’ll have 2 years of angst and struggle, so all that stuff will be needed.  We know where to find you and at some point you’ll get a list.  But while you’re waiting for that phone call, email or tap on the shoulder, please consider the some of the following ways you can help make a difference:

  • Give blood.  There’s always a need for blood and blood products, and it’s a quick way to provide help to the thousands of people who need blood each day.

  • Consider checking the organ donation box on your driver’s license.  Many kidney transplants are done from live donors, but there’s still a waiting list of people who need kidneys and other organs to live.

  • Help the Ronald McDonald House.  http://rmhc-centralpa.org/web/
    These folks are awesome.  You may know of the actual Ronald McDonald House, which provides a live-in “home away from home” for families with children in Hershey Medical Center (and other hospitals, of course). Less known is that they provide tremendous resources to any families with a child in the children’s hospital, including food & drinks, lockers, rest areas, computer access and children’s activities.  We’re fortunate to live nearby and not need to stay at the house, but couldn’t have made it through this first month without their hospital resources. Aside from financial donations they can use all sorts of other items (soap, games, snacks, etc.) so there are plenty of opportunities to help.

  • Consider donating to the Penn State Hershey Medical Center Children’s Hospital. http://www.pennstatehershey.org/web/childrens/home
    As a proud graduate of the University of Pittsburgh it’s hard for me to admit this, but at least this part of  Penn State doesn’t suck (you’ll understand this better if you went to Pitt).  We can’t say enough about the awesome care provided by their doctors, nurses, support staff, and everyone else we’ve come across (though to be honest, we’ve heard some complaints about the staff at Starbucks).  Every little bit helps.

So…we’re going to move forward and see what happens.  She’ll have a small surgery next week to insert a catheter, and should start her first dialysis session by Tuesday or Wednesday. There’s no guarantee of success – in fact, the odds may be against us – but we’ve made our peace with that.  All we can hope for is that we give it our best shot and do what we can.  It’s sad, depressing news, we know, but we’re moving ahead with as much hope as one can muster.   Hopefully there will be some positive news to share later in the week.  We thank all of you for your continued prayers and words of support.


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A Room with a View Cleaning Day!

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