Wednesday, February 1, 2012

I had a friend say to me today, "no news is good news, right?"  And she's correct!  No news is FANTASTIC news!!  Stephen is doing amazing and growing longer and eating more puffs and get smarter every day!  He's going through a can of puffs almost every single day and starting to pick up and tip back a sippy cup.  He tips it back and chews on the "nipple," but doesn't really drink much.  But I'm so beyond thrilled with the puff eating.  It's actually a HUGE joy to take him out to eat because he now can sit in his high chair and join us eating breakfast/lunch/dinner.

Last week we spent an extended stay at my parent's house in York.  I had to be in Lancaster for work on Friday, so Stephen and I went up on Wednesday morning and stayed through the weekend.  It was so great for him to see different faces and spend time with some people other than me (Bill's working really long hours right now, so poor Stephen is stuck with me most of the time) like his cousins.  He slept pretty good at night, except for the one night that Bill was there, but didn't nap so great.  But Mimi and Poppy kept him occupied really well! The only downside to our trip....I got sick :(  I picked up some nasty germs and ended up sick in bed (and the couch) both Monday and Tuesday.  Maureen, Stephen's nurse, was such a god-send on Tuesday so that I could get some rest and stay away from Stephen so that I didn't pass along my germs.  He's got a tiny cough so I started doing his nebulizer treatments again, and so far, so good.

I really wish I could explain better in words and in pictures just how amazing he's doing right now.  Lately when I tell people a little bit about our story, they don't believe me because he just looks so great!!!  To someone who doesn't know us, he's just a cute little boy.  You'd have absolutely no idea that he has no kidneys and does dialysis every single day unless you pulled up his shirt.  It's so great!

We're actually getting a few steps closer to transplant as well.  As I mentioned before, we were able to finish Stephen's tissue typing blood work and I've been working on rounding up some of his other medical records such as his ABO typing (which is done each time he has surgery), anesthesia reports, and his eye exam from his time in the NICU.  But most importantly, we're going back to CHOP this month to meet with his transplant team!  We'll be there on Thursday, February 16th.  I'm a bit nervous about this visit because they will be formally presenting Stephen to the transplant committee.  I don't know much about it yet, but I think this is where they make the formal and final decision about whether or not they feel as if Stephen is a good candidate for a kidney transplant.  Based on our earlier meeting with the surgeon and head doctor, I have no doubt that he is a candidate, but it's nerve wracking none-the-less.  I do think they'll tell us he still needs to grow more, but that's ok.  And once we get the green light to be listed, we'll seriously start the search for a donor.

In other news....I've been fighting tooth and nail with Medicaid, Medicare, and our private prescription drug plan for cover and pay for Stephen's prescriptions.  Bill's Mom watched Stephen for over 3 hours for me today so that I could figure out what the hell is going on.  It turns out that the people at the local Medicaid office in Arlington gave me really bad and incorrect advice about Stephen's Medicaid and Medicare.  After Medicare Part D became such a nightmare for me at the end of last year, I decided I would disenroll him so that Medicaid would kick back in and pay for his prescriptions.  The County told me that would be fine.  After I disenrolled him last month, I received a letter from Medicare telling me otherwise.  Today was the day of reckoning; the first day that he wouldn't have Medicare Part D.  So when I went to refill two prescriptions today, they were denied by Medicaid.  Sorry, it's a very very long and complicated story resulting in me spending hours on the phone today re-enrolling him in a Medicare Part D plan and fighting with our private insurance company to cover Stephen's prescriptions.

You see Wells Fargo changed both health and prescription plans this year and this change has been detrimental to us.  They won't pay for some of Stephen's prescriptions because they are compounds.  Meaning that the pharmacist has to actually make some of his prescriptions instead of dispensing a pill because he is a little baby and needs a different concentration than an adult.  It's just reprehensible to me that they're going to deny him a simply drug that would cover for an adult.  And these drugs keep him from being hospitalized!!  And to top it all off, one single drug that was costing me $30 a month is now costing me $100 a month!  And what's the use in having Medicare to help when it denies everything too?!?!?! The system is a freaking nightmare and I'd wager not one of those politicians sitting on Capital Hill, a mere 5 miles from my house, or the insurance companies executives understand the system nor think about someone like Stephen when they conjure up these ridiculous programs and rules and regulations.  For once I wish they'd actually let the people, like myself and other caregivers who deal with this crap on a day-to-day basis, help shed a light on the deficiencies of the health care system in this country.

Okay, I'll get down off my soap box now.  Sorry!  It's just that this whole system is a nightmare.  And I cannot for the life of me imagine how an elderly person or someone who speaks English as a second language every wades through it all.

But I'll end on a more positive note as I started tonight with some recent pics of Stephen.  Oh and don't forget....tomorrow is Groundhog's Day!!  Will we have 6 more weeks of winter or will Spring come early?!?!  Guess we'll find out tomorrow!!

(Sorry, they're a little grainy since I took these with my iPhone.)

And a video I took of the Tickle Monster attacking the Tickle Bug :)  Sorry it's sideways.  I'm not the best videographer around!


  1. He is getting so big!!! We have an appointment with the transplant team on the 16th for Sami too!!! :o)

  2. Happy birthday to Stephen's mama!!!!!! You def trump a Groundhog today! ;-) Stephen looks amazing!!

  3. Hi Lindsey,
    So glad you posted. I was beginning to worry again...'didn't want to jinx by sending a "worry wart" inquiry...figured no new is good news. Happy to hear that all is going well. Stephen is changing with every photo post...what a personality!!!!
    Keeping you all in our thoughts and prayers....
    Aunt LuAnn

  4. And a Happy, Happy Birthday ... February 2nd to Mommy Lindsey. We love you sooooo much.
    Mom & Dad

  5. Linds, your little guy looks great. I absolutely love the tickle monster clip, it's sooo cute!