Tuesday, October 11, 2011


The biggest news lately in our house is that we've "officially" started Stephen's transplant process!! I say officially in quotations because we've haven't had any of the work-up related appointments or met with the transplant team yet, but I've made contact with them a few times and they've now officially gotten the letter from our nephrologists indicating that Stephen is close to being ready for transplant. This is such a HUGE step and an even bigger step because it's happening before he's even a year old!!! I'll never forget going to see the pediatrician for the second time after Stephen was discharged from the NICU and talking about his weight and length growth chart and what the requirements were for transplant. When I explained to her that he needed to be about 10 kilos and between 85 to 100 cm and that we were really hoping he'd get that big by the time he was 1.5 to 2 years old. She just looked at me and send, "Realistically, I don't think he'll get that big until closer to 3 years old." A little part of me was crushed when I heard that. I tried hard not to dwell on some imaginary date for Stephen's transplant, but it's been really hard not to. To us, transplant means a normal life. It means that we can have a normal life, with normal baby/toddler/kid things, no dialysis, we can take trips without having to spend time getting medical supplies organized, shipped, and packed, not having to schedule everything around dialysis, and biggest of all, Stephen will feel good which means he'll be able to eat, not throw up constantly, sleep, and whole long list of things. I worry sometimes that maybe I'm putting to many eggs in this transplant basket; that transplant is going to make some things easier, but it won't solve our problems. But I hope it will at least drastically changes things for Stephen and for us.

But back to what has actually happened! So....after getting the go ahead from nephrology, I made a few phone calls up to Children's Hospital of Philadelphia (CHOP) to try to get an appointment with the transplant team. Of course you get a receptionist/operator person and it's like where do you even begin to describe why you're calling. Uh....my son has no kidneys and he needs a new one so I need an appointment?! Weird. So I left a few messages and waited anxiously for a few days to get a return call. Then on Friday, September 23rd, I got a phone call from Dr. Baluarte himself. Dr. Baluarte is medical director of the kidney transplant program. His first question is, "How do I help you?" Again, where do I even begin?!?!?! So I explained a little bit about Stephen and who his nephrologists are and he responds by saying, "I spoke with Dr. Weintraub a long time ago about a little baby with ARPKD that wasn't born yet. I imagine that was your son." YES!!! That was definitely Stephen! I go on to explain more about our situation and the fact that we know how amazing CHOP is and that we'd like Stephen to have his transplant there despite the distance and our concern about not being Stephen's blood type. He agrees with me that it might be a little early to start this process, but based on his size and weight and the fact that we don't match his blood type, it would be a good time to meet the team and start the process. OH MY GOD!!! Now I'm getting crazy excited!!! We talked a little more about coming up for a visit and the process and I tell him that we've been through this process with the fetal team before Stephen was born and we met Dr. Kaplan back in November. The next step would be for Dr. Weintraub to write a letter chock-full of all the medical terminology and everything that has happened to Stephen in the past 9 months, and then once he receives the letter, he'll have a case manager call me to set-up all the various appointments and our visit. The letter was sent to Dr. Baluarte on Friday, September 30th (I received a copy as well), and then I got the much anticipated call last Friday (October 7th) from the case manager.

Our visit to CHOP will consist of 5 appointments; 1) Dr. Baluarte, 2) the family meeting which explains the process and all the details, 3) transplant surgeons, 4) social work and psychology, and 5) GI consult since they are a little concerned about the liver issues and I told her about the issues we've been having with our GI doctors. Because we live far away from the hospital, they were going to condense it all into one visit like we did in November, but with a 9-month old in tow, I think two days will probably work out best for us. So we're hoping to have our visit by the second week of November. Wouldn't that be crazy if we end up at CHOP exactly one year to the day we were there last year?!??!??! But this time with our beautiful baby boy!!!!!!

So now I'm back to anxiously awaiting another phone call from CHOP...hoping it will be tomorrow!!


  1. Exciting! I too often wonder if we are putting all our eggs in one basket but overall what choice do we have. Our son Harris is 20 months and has been waiting for a liver for 6 months. Just to warn you because it caught me off guard- it takes a long time to get listed with lots of hurdles. I got really frustrated because I thought it woul be quick but it was 2 or 3 months.

  2. I'm sitting here in York and wondering what difference a year makes! We remember the scary feelings you all had a year ago, the anticipation waiting for Stephen to appear, and then the apprehension and joy when he was our own "miracle man". Daddy and I are so hopeful and pray for the good doctors at Fairfax and CHOP to help our little man get a kidney, and the wonderful life he deserves. God (and grandma Bitner)are watching over him (and you two) each and every day. All our love and blessings. Mom & Dad

  3. This is truly wonderful news! We will keep all of you in our prayers and know that God will continue to bless Stephen.

    Aunt LuAnn & Uncle Dick

  4. What awesome wonderful news. I know this will be the start of a whole new journey, and might not be easy. Stephen is so tough and so determined to be a strong healthy boy! We are thinking of you and praying for you always!

    What can we be doing to help? We all want to know....

  5. I'm reading this and crying. Praise the Lord that you've gotten to this point! We will continue to pray our little hearts out for Stephen. Such exciting news. Love and blessings to you all!

  6. Linds, this is such great news! So happy to hear Mr Stephen is getting bigger and stronger every day. Praying for you and your family that the medical team at CHOP provide excellent care for Stephen.

    We live 45mins from CHOP so please let me know if we can do anything to help.