Beach!

No news is good news!!! We had awesome labs last week so we packed up and headed to the beach! It was a long ride down to Southport, NC, but Stephen did great (way better then Mabel), made some trucker friends along the way at a truck stop (he learned the all important "honk" symbol), and has been having so much fun exploring Nanie and Poppa's beach house.  We took him to the beach on Sunday not really sure what was going to happen, but after a few tears and about two hours of not leaving the blanket, he finally ventured down to the water; but definitely not without his dump truck! He ended up having a blast digging holes and running back and forth from the water to the beach as the waves came up. And after a while, the tide went down exposing a very wide sand bar, and he ventured out into the ocean. I'd say the beach ended up being a big success and life after transplant is soooooooo good!!

Slight Change

Bill took Stephen for labs in Virginia on Thursday (his first time taking Stephen by himself to an appointment and he did great!) and his white blood cell count and ANC came up slightly, but not enough, so Stephen will need three more neupogen shots this weekend before we repeat labs next Wednesday at CHOP.  Thankfully, I'm headed out of town, so it's up to Dad and Nana to conquer the shots! But after our "training" session last night, I'm confident they'll do an A+ job! 

I'm actually on the train as we speak, passing through my home-away-from-home, Philadelphia, en route to NYC to spend the weekend with my best friend. And very excited about it! And also pretty excited for Bill that he gets to spend some good TLC with Stephen. With all of our (Stephen and I) travel lately to CHOP and with Bill's busy work schedule, they haven't gotten to spend as much time together as they both would like. Bill is certainly Stephen's favorite person right now and vice versa, and I know they'll have fun together this weekend! And hopefully I'll have some super cute pictures to share of my two favorite people.

And then it's off again to Philadelphia on Tuesday for a clinic visits at CHOP on Wednesday and hoping his numbers continue to improve and I can't stop worrying so much! Ha! Yeah right! 

Tough Clinic Visits

I apologize for the lack of a post following last week's clinic visit, but it's been two weeks in a row with not-so-great news.  Last week was a stressful visit at transplant clinic and this week was much of the same. And not just because of the lack of sleep, spending way too much time in the car, or waiting hours at the hospital to see the doctor with an antsy 2.5 year old! Stephen's blood work hasn't  been great the past two weeks and I just wish his blood work would match what we see on the outside. It's very hard to explain exactly how things are going to people when your child is running around like a mad man, chatting and singing up a storm, and all around doing so awesome by the looks of it; but, what's happening inside his body isn't reflective on the outside. He's still having trouble with his white blood cell count (this week was an all-time low) and now fighting a virus called the BK virus.  It's not a virus that manifests itself as a cold or sore throat or anything like that (in someone who is immunosuppressed), but rather a virus that has the potential of hurting his new kidney. So we have started a new medication to help fight off the BK virus, will stop his cellcept today, and start the neupogen shots again.  And with all of this happening, I will have to continue to take him to Philadelphia every week (we were supposed to start every other week visit today) with labs at home in between and have been asked to keep him away from lots of people until his white blood cell count comes up. Here's hoping the shots and the new medication combo works and things start looking up super quick!! We could just use some good news for Mr. Stephen!!

Fun Night

Stephen and I are back in Philadelphia tonight after a nice little vacation to the beach last week. Bill and I spent a few days in NC while Stephen spent his vacation at Nana and Poppa's house. A great little break for everyone! And best of all, we got to spend some time with Stephen's kidney donor, Kristin and the whole Freeman family while down in North Carolina.

After checking into the Gift of Life House, we strolled over to one of our favorite parks; Franklin Square, to enjoy the awesome weather and check out the fountains. While there we also shared some yummy french fries, chased some bubbles and ran through the grass barefoot. And...we got to finally meet one of our good kidney friends; Parker and his Mom and Dad, Kristen and Jason. Kristen and I have become good friends over the past two years, bonding over our little super boys, but we haven't had the opportunity to meet until now. The Porche's live outside of New Orleans, but are here at CHOP this week while Parker is evaluated for his kidney (and possible liver) transplant. Parker and Stephen have the same birth/infant story and the exact same disease and connected long ago while Kristen was still pregnant and Stephen was just a little baby. I'm so happy we finally got to meet, although wish it were under different circumstances for sure. You can read more about Parker and his journey to transplant here: http://parkersfightagainstpkd.blogspot.com/

Here are some pictures of our fun night. Now lets just hope the fun continues and we get some awesome lab results tomorrow at transplant clinic (and some sleep for Mommy!)!

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! :)