Great Numbers

I'm so happy to say that transplant clinic visit went great yesterday and Stephen's white blood cell count (WBC) was back up and in a normal range, his creatinine is a perfect 0.3, and everything else looked super-terrific! On top of that great news, the trip up to Philly went great (minus the horrendous traffic) and our Mom/Son sleepover at The Gift of Life House went great.  Stephen didn't go crazy Sunday night when I put him to bed in the pack'n'play which was a HUGE sign of relief for me.  I was dreading the trip just because the previous week's bedtime went so horribly, but he did great this week and behaved himself pretty good during the long doctor's office visit and we hit the road for a visit to Mimi and Poppy's house in York by noon. And yesterday afternoon I received some additional good news from Amber Pharmacy, our new specialty pharmacy, which made the day twice as great.  It was such a relief because our end to the previous week (Friday), was just the opposite.  Friday was a no-good-terrible-bad day.  It was probably one of the worst days I've had from the standpoint of insurance/pharmacy issues, and I've had some real hum-dingers in the past when Stephen was a baby.

If you remember from my previous post about Stephen's WBC issues, you know we were waiting on the arrival of a new medication called neupogen which would help boost Stephen's WBC and keep him out of the hospital.  Well, it days to get the prior authorization completed and then there were some major hiccups between folks at the pharmacy and I was told a lot of conflicting information about what insurance information they had, when the drug was shipped, whether or not the prior authorization was complete, etc.  Finally, it got straightened out on Thursday (I should have had the medication by Wednesday) and it was over-nighted to me, along with Stephen's cellcept medication (one of his super important anti-rejection drugs) for Friday morning delivery so that Stephen could get one dose Friday, one on Saturday and one on Sunday before we drew labs on Monday (these are shots in his thigh). But when the medication showed up on my doorstep Friday morning, I realized it hadn't been shipped improperly rendering the medication useless because the medication has to remain cold and someone had packaged it in last week's crazy heat with one measly little ice pack. And as such, the medication was hot; not cold. That was the first thing.

Then minutes after realizing this, I received a phone call from the same pharmacy saying they incorrectly filled Stephen's cellcept prescription. The person who had filed it with insurance didn't know what they were doing and should have known that the pharmacy is no longer filling this medication. Say what?!?! It's a very long story...but the gist is that Medicare only reimburses the pharmacy for generic brand cellcept.  But there is no generic for the version of cellcept that Stephen needs (liquid suspension so that it can be given through his g-tube), but Medicare will still only reimburse for the cost of generic and as such, the company can't take the financial hit of the difference in the cost of the medication.  To say I was beside myself is an understatement. I know I get myself worked up about these things and it probably doesn't help the situation, but when a pharmacy, who specializes in transplant drugs, tells me they won't fill my child's medication; the medication he HAS TO TAKE NO MATTER WHAT in order to keep his transplanted kidney, I go a little crazy.  I then proceeded to spend all day trying to come up with a solution and an alternative way to get around this and a different pharmacy to fill the medication.

By the late afternoon, I was so beyond frustrated that no one had any answers for me and finally called and spoke with the billing supervisor who again explained the situation to me that the company had made a "business decision" not to fill cellcept for those patients needing liquid suspension brand name cellcept.  And on one hand, I do understand it's business, and they do have the right (I guess) to say they won't fill a prescription, but on the other hand, I just don't think it's the right thing to do, so we would be taking our business elsewhere.

But that great news I received yesterday afternoon came from the same pharmacy I was cursing; the decision makers at the company had changed their minds, reversed their "business decision," and would fill Stephen's cellcept going forward. A huge WIN for Stephen and for me!!!!!! So, I'm happy to eat my words and say "thank you" a million times over to Amber Pharmacy for making the right decision.  And even though we had some major hiccups the past two weeks, I greatly appreciate them admitting their mistakes, working to fix them (they overnighted me more neupogen packed in a cooler with lots of ice packs), and making a great decision on behalf of their patients. So...if there's anyone out there in need of a compounding/specialty pharmacy, please check them out (they ship nation wide for free from their pharmacies in Nebraska, Illinois, Texas, and Pennsylvania)!  And tell them Stephen "Superman" Schwartz sent you :)

In other cool post-dialysis/post-transplant news.....Stephen's now wearing big boy pajamas!!! Now that he no longer has his dialysis catheter, there's no reason why he can't wear regular pajamas.  he still has his feeding tube connected at night, but he doesn't pull it.  The problem with the snap pj's was actually that it was so difficult snapping and unsnapping them all the time to remove the extension tube, that we would just leave it on after bath time and dinner, but Stephen's so incredibly active now that he kept stepping on it and yanking it out! So now with the two-piece pj's, I can easily take his tube off and on, so no more yanking the tubie out.  I went a little crazy buying pj's the other day at Old Navy, but I was so darn excited I just couldn't help myself and with no sales tax in PA, it was a no-brainer. Plus they're so darn cute!!

  

Happy 4th of July!

On The Edge

I've been on the edge of my seat for the past 24 hours waiting to hear if Stephen was going to be re-admitted to CHOP. His visit at transplant clinic went well on Monday morning, but by the afternoon I had received a call from the doctor that his white blood cell count is dangerously low again and they wanted to admit him to the hospital for three days so he could receive three more infusions of the neupogen.  He has no signs or symptoms of an infection and the last thing I wanted to do was to admit him to the hospital, so I kindly asked if we could come up with an alternative solution.  My alternative solutions were two either 1) do the infusions as an outpatient since they only take an hour and I would bring him each day (and stay at The Gift of Life House) or 2) do the infusions/injections myself at home.  Through my fellow-kidney Momma's on Facebook, I had learned previously that neupogen could be given as an injection instead of an infusion, so I asked the doctor if we could do that.  Plus, I feel like this is going to be an on-going issue for Stephen, so we need to come up with an alternative solution besides admitting him to the hospital each time.  The doctor indicated she wasn't aware it could be given as an injection, but said she would conference with the pharmacist in the morning and let me know this afternoon.  And she was really sympathetic to my plight about the need for me to be at work today....finally, someone who understands the need to try to have some normalcy in our lives!!

 

Luckily, my friends were right! And I can give Stephen three neupogen injections at home and then we can check his white blood cell count next Monday when we're back in transplant clinic! What a HUGE sigh of relief!!  We had so many other appointments scheduled this week (GI nurse, physical therapy, occupational therapy, attorney meeting to do our wills, etc) and not only did I not want to have to reschedule them all but I definitely DID NOT want to be back in the hospital all week or spending the week with Stephen in a hotel room!  The whole "sleep in a pack'n'play" is not really working out so well for Superman.

 

And even better yet....the new specialty pharmacy I'm using (another Kidney Mom recommendation) is on top of the authorization process and I should have the medication by Thursday.

 

So bad news we're battling this problem and poor Stephen has to get an injection the next three nights, but good news that we don't have to be admitted back to the hospital. But I don't think he's bothered by this what-so-ever! :)

 

Weekend Round-up

Just checked into The Gift of Life House for the night and someone is already feeling relaxed and practicing his yoga moves.

In other weekend news, he spent some time doing chores:

And working on his golf game:

Enough about that guy; I finally got to see this movie:

And was totally shocked to see they shot the whole ending to the movie at The Franklin! That's the apartment building we lived in after transplant in Philadelphia! It was so cool to see the lobby in the movie (although it looks different now) and our old stomping grounds around the building. Makes me feel like me and Bradley Cooper are kindred spirits :) hehe

Oops!

Just realized that Sunday and Tuesday nights posts never published. So I'm going to publish them now and see what happens. Oops!!

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. Well....it'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!

Dinner Time!

Cheese-Its, potato chips (Utz to be exact), and $1 crackers we picked up at Food Lion on the way to the park. Not a very diverse dinner, but I'll take it! Plus, some apple juice. We tried grapes and a cheese stick but those were a no, but I think having the opportunity to sit in a high chair and experience "dinner" will go a long way.

On a totally different note, I'm heading back to work tomorrow! Yeah!! Just one day a week for now, but my hope is to work up to two and go from there. We still haven't ironed a schedule between our docs in VA and CHOP, so it looks like we'll be driving back and forth to Philly for awhile (at least through the Summer) which sort of restricts me a bit, but it seems to work more smoothly that way so that's what we'll go with.