Friday, October 29, 2010


Today was an excellent day!! First of all it's Friday.  There's no better day than Friday in my opinion.  Yes, we still have to go to work, but the whole weekend is ahead of you.  And I don't know why, but I seem to be more productive on Fridays.  Anyway, the real reason today was an excellent day was all because of Dr. Kanwal Kher at Children's National Hospital in DC.  Since we found out about Stephen's kidney's, he has been the very first doctor to actually give us any hope and offer treatment options.  During our meeting today with Dr. Kher, we talked about how critical the first few hours will be in the NICU for lung development but that if we make it past those first few hours, we'll immediately start dialysis and then go from there as things progress.  The worst case scenario in terms of the kidneys is that they will be so enlarged that they'll have to be removed within the first few days of life to allow for extra room for the lungs to develop.  But that's ok.  He can still survive on dialysis with no kidneys until he gets big and strong enough for a transplant.  And then hopefully Bill or I or another family member will be a good match and Stephen can get a kidney from one of us.  Apparently they have much more success with grafting the donor kidney when it comes from a family member versus a cadaver. And I know Bill is really hoping that he'll be the match!!

We understand and know that being on a respirator coupled with the dialysis is not easy and brings with the possibility of infections and other complications (not to mention our lives will totally change), but Dr. Kher has dealt with this many times and gave us numerous examples of cases where children had their kidneys removed or went on dialysis all coupled with the lung issues, and have gone on to receive new kidneys and are now healthy young adults. 

What was even better today was that Dr. Kher actually recommended that Stephen's kidney care be passed off to Dr. Fildes at Fairfax Hospital, who can provide the same level of care as he would and then at least we can deliver, recover and be at Fairfax Hospital with him the whole time.  They don't actually deliver babies at Children's National, so Stephen would have to be stabilized first and then transferred via air lift downtown to Children's.  So not only was he a totally compassionate doctor to our plight, but recommended what he thought was going to be best for all three of us!!!

I called our contact today at Children's National, Lisa Cantu-Parks, who has been amazing and set us up with Dr. Kher, and told her I would tell anyone and everyone I could about how incredible Children's was to us.  Especially after the day we had yesterday, I can never thank her and Dr. Kher enough for their compassionate support.  So...if anyone finds themselves with some extra cash and is looking for a good place to donate...might I suggest Children's National Hospital? :)  haha, just kidding.  But not really. :)

And also just wanted to say how grateful Bill and I are for the outpouring of love and support we've received from everyone over the past week and a half.  We have truly appreciated every single email, phone call and connection that you have sent us.  Words really can not express how grateful we are to you all.  I know we've missed responding to some emails and calls, but we really do appreciate each and every one of them.  Your thoughts and prayers are what is keeping us going each day.   And I know they will continue to keep us going through the long and tough road ahead.

Much love,

p.s. Happy Halloween and hope everyone has a wonderful weekend!


  1. So glad to hear! Very encouraging! Let us know if we can do anything.
    xoxo, ash

  2. Love you guys SOOOO MUCH!!!! Know that EVERY DAY ALL of you are in our thoughts and prayers!!! And although I am jumping ahead like a "bazillion" I want you to know that if Stephen ends up going home on a ventilator I would drop EVERYTHING to come and be HIS nurse!!
    Love Kathy

  3. So glad you got some good news!

  4. We've been praying that you would hear some good news! We'll keep the prayers coming and just know that we're all pulling for Stephen!!!
    Love, Colleen & Casey

  5. Mom and Dad are sooo grateful that you and Billy have FINALLY found a compassionate doctor who is willing to help you develop a "plan" for the next few weeks, months, etc.

    A BIG sigh of relief for this doctor. Now ... on to CHOP in Philadelphia for more education, and hopefully, some medical specialists who also can see past the initial concerns.

    We are so proud of you both and just know this will make you a stronger, loving couple.