Wednesday, July 10, 2013

Two Months

Yesterday marked a pretty important milestone in our transplant journey; Stephen and Kristin's two month kidney-anniversary! It's so crazy to think its only been two months since the big day because right now it feels like a lifetime ago. When I think about how hard those days were after transplant and how I thought he would never recover from the trauma of the surgery and then watch him running around the house like crazy chasing Mabel or playing contently with his cars and trucks chatting to him self (like he is now), its hard to remember what life was like before transplant.'s not that hard, but it seems life a whole lifetime ago or maybe like it was someone else's life and not mine.

Except that I spent almost five hours on the phone yesterday with Medicare, our insurance company, and the various pharmacies filling his 12 different prescriptions. Then it's a big slap in the face back to reality! Stephen's coordination period between Medicare and our private insurance ended on June 30th, but no one, including Anthem BCBS knew that. I only found out when his medications started bouncing back to the pharmacy. We all, including Anthem, didn't think this would happen until October. So now, I have to notify everyone and their brother that his insurance has changed; a pretty big feat when you have lots of doctors! Thank goodness it's a least two months after transplant and not right in the middle! Oh and I definitely blew a gasket yesterday when insurance told me they were denying his $337,000 claim for the hospital stay because we didn't have the approval for his transplant. That was a fun phone call. HA! But it all got straightened out and the woman on the phone clearly didn't have a clue what she was talking about. 

But anywho....Stephen is continuing to do so fantastic! His labs on Monday were great. Creatinine is back to near perfect at 0.3 and his ANC and white blood cell counts were close to normal and his Prograf level is also right in the range they want to see it. We've decided to continue to travel back and forth to CHOP each week for his weekly clinic visit. Due attempted to do labs and see his nephrology team here in VA the past two weeks, but it hasn't worked out. The communication wasn't working well between the two teams and it just takes too much time to get the lab results and a doctor to make a decision on how to change his medications. Basically, it was incredibly frustrating and we've decided that its actually more efficient for me to drive up to Philly with Stephen Sunday nights, stay at the Gift of Life House and then do labs and clinic Monday morning at CHOP. It shouldn't in theory be that way, but for now, that's what we have to do. We have another three weeks of once a week appointments and then we'll go to every other week. So it's not that bad. We are becoming intimately familiar with I-95!

I had someone ask on the blog this week how are lives have changed since transplant, if we are able to get some uninterrupted sleep now without dialysis and how our routine has changed. Well, I'll try to answer without writing an entire book! First off, yes, we are able to def uninterrupted sleep now! Although, I definitely still feel exhausted at the end of the day and in the morning still! But now it's because I have a toddler with two years of pent up energy and he goes goes goes all day and some how gets his biggest burst of energy at 8pm each night. His routine still isn't the best because he's getting up around 8:30-9am but doesn't got to bed until close to 9:30pm. He gets his meds at 9am and 9pm on an empty stomach, so then we do tube feeds at 10am, 2pm, and 7pm. So I've been trying to figure out how to fit our dinner in, bath time (he's a super sweaty kid now so we do bath a lot now), and night meds all while getting him to bed at a decent time. But it's two-fold because now that he isn't connected to a machine at night for 12 hours, I'm totally cool with him staying up! I know that if he's going to try preschool in the Fall, we'll have to get a better schedule with an earlier bedtime, but right now his labs have to be drawn at 9am, so if I move his med time up, his lab time goes up as well. And we're slow moving in the morning! Basically, it's a huge balancing act with timing everything and we're slowly but surely working on getting it all ironed out.

But our lives definitely have changed! For instance, we spent the 4th of July enjoying the pool, good food, fun, and fireworks with friends. Last year, we couldn't have done that because Stephen had to be in bed for dialysis. Things like fireworks, watching the while Super Bowl game with friends and other evening activities like going out to dinner were very challenging for us. Now it's not big deal! I still have to bring his feeding pump and plan for meds and formula, but no more worrying about getting an infection at the pool or being connected to dialysis. And I LOVE being able to order Stephen French fries or potato chips and water or juice when we go out. I know it probably seems weird to people that I order my kid chips and fries, but to us it's a HUGE deal! 

And this morning I spent an hour with Stephen's speech therapist going over his plan for his therapies and trying to figure out preschool in the Fall for him. I'm hoping and planning that he'll be able to do two full days a week. It'll be great for him to learn and play with other children and will do wonders i think for his skill development. And great for me to get back to work more often! Our only challenge is figuring out how he'll get fed at school, but I'm convinced there's a way! So that's the next challenge! Oh and I should also say its been so great with all the traveling we've been doing back and forth to Philadelphia and not lugging around or worrying about tons of medical equipment and supplies. We pack a backpack and one duffel bag, a small cooler for meds, his IV pole and that's it! 

So those are just some of the ways life has gotten easier. The worry is still there that his blood work at anytime could come back really bad and we'd be back in the hospital, but the worry isn't as constantly it was before because the days and nights are so much better and Stephen is doing so amazingly well. He's such a joy and so fun to be around and so darn cute! And so remarkable! It's just so amazing to see the difference between a sick little boy and a healthy little boy!


  1. Hi Lindsey,
    So good to hear about Superman's adventures! Yes, it is amazing that it has been two months--he has made amazing progress! I think your decision to travel to CHOP is the absolute best one you could make--No question--you know they are the best!!
    It is great to hear that your lives are a bit more normal now than they have been for quite some time. It is understandable that there is always that fear of a problem cropping up unexpectedly, but slowly that worry will become less and less. He is a miracle and we are all going to be amazed as he grows and develops into a very special young man!
    Aunt LuAnn and Uncle Dick

  2. Thanks for sharing - truely you are blessed with a wonderful journey and Stephen is blessed with wonderful parents to guide him through this journey. What blessings all around. Sharing your journey has blesssed so many others so for that - thank you. Our prayers for you all continue each and every day. keep up the great job.
    Kathie Hanacik

  3. You do such a great job writing this blog. I love how you put words together to express yourself and to explain to us what is happening. It is visual and thought provoking. Thank you .