How You Can Help

I hope I'm not being too forward in asking for your help with something very important to us. Our US Senate and Congress are currently contemplating legislation that would extended the time that transplant recipients receive coverage under Medicare for their immunosuppressant drugs. Currently, kidney transplant recipients who are eligible for Medicare due to irreversible kidney failure, but who are not Medicare-aged or Medicare-disabled, lose their Medicare three years after the transplant. As you all know through my ranting and raving about health insurance, Stephen falls exactly in this position. He currently receives Medicare, not because of his age, but because of his end stage renal failure. He will continue to receive Part D coverage, for his immunosuppressant drugs for 36 months after transplant. But once that time expires, we lose Medicare and have to rely on our primary insurance (through Bill's employer) to pay for the drugs. Although the drugs are expensive and we will pay a lot out-of-pocket, we're fortunate enough at this time that we can work and pay for the drugs. But I'm very concerned for Stephen when he reaches the age where he no longer qualifies for our health insurance and is on his own as a young adult. I think back to when I graduated college, and I was dead broke moving to one of the most expensive cities in the country. He will need these drugs for the rest of his life to ensure he doesn't reject his kidney and basically to keep him alive. This legislation would continue access to Medicare indefinitely, but would cover anti-rejection medications only. All other Medicare would end after three years for kidney recipients, as under current law.

I'm asking that you might be able to take 10-15 minutes and write to your local Congressman/woman and Senators to either thank them for already supporting this Bill or to ask them to please give their support for this important health care bill.

You can send an automatic note (it's super easy and quick) through the National Kidney Foundation website. Or click here to see the Current Sponsors and Co-Sponsors of this legislation and send them your own personal note.

Both our Congressman (Jim Moran) and Senator (Jim Webb) are co-sponsors, so I emailed them directly through their websites to tell them a little bit about Stephen and why this legislation is so important to our family. If you're interested in using my note as a basis for your own, here's what I said:

Dear Congressman Moran,

I wanted to send you a short letter of thanks for your support of the very important Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011, which was introduced by Senator Durbin (D-IL) and Representative Burgess (R-TX) to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

This bill is extremely important to me as it directly affects my 17-month old son who has end stage renal disease and is currently on the waiting list for a new kidney. My son, Stephen, was born with a rare kidney disease and had both of his kidneys removed when he was 6 days old and started dialysis two days later. Since that day, he has been on dialysis for 12 hours every night and will be until he receives a life-saving kidney (hopefully later this year). He currently receives Medicare Part A, B, and D due to his diagnosis, but as you know, will lose his Medicare coverage 36 months post-transplant.

My husband and I are lucky enough to be able to provide him with primary health insurance through my husband's employer which will help to cover his immunosupressant drugs, but we will still have to a significant amount to pay out-of-pocket to pay for those drugs. And once my son is an adult and no longer qualifies to be under our health insurance, he will be on his own as a young adult to pay for these life-saving, but extremely expensive drugs that he will need for his entire life.

We are hopeful that by the time he is an adult, technology in this field of health care and science will be much improved and researchers will find a cure for end stage renal disease. However, we must plan for the worst case scenario and begin saving for his health care costs now. Even though he is just 17 months old, we've had to establish a medical savings account for him so that we can give him the best chance at life once we are unable to provide him what he needs.

By supporting this bill, you are giving thousands of people the chance at a long, healthy life without the concern and worry of how they will pay for their life saving drugs. Having a child with a fatal disease that has no cure is devastating, but knowing that he'll always be able to receive his life-giving medications, helps to ease some of that burden. We've had to make a lot of sacrifices over the past 17 months, but I hope to God I'll never have to choose between rent or food and his medications.

Thank you again and please feel free to read more about our amazing miracle baby at www.stephens-journey.blogspot.com

Sincerely
Lindsey N. Schwartz

Thank you so much for considering doing this for us. Who knows if any of these elected officials even read their email, but hopefully it will fall into the hands of someone that actually cares about their constituents. We really appreciate all the support!!!!

Update @ 2:15PM Friday afternoon: I just received a call from Senator Webb's office! The woman I spoke with was so nice and appreciated my thank you letter and will be passing along the letter and our personal story to the Senator himself!! I can't believe it and am so excited! I love being surprised by the care and helpfulness of people. It renews my spirit!

Popped!

I found Stephen's gtube with a fully inflated ballon in his pajamas this morning when I got him out of bed.  That was a first!  Thank god it went back in with no problems because who knows how long that thing was out!  Typically, the hole closes up within an hour of being out.  For some reason, I have a feeling this is going to happen to us quite a bit!  Time to start carrying around an extra gtube and syringe around with us!  Someone's got some quick little hands!!!

Wonderful Memorial Day Weekend

We had a fantastic Memorial Day weekend this year!  Stephen was happy and healthy and all three of us were able to get outside and actually the weather.  Last Memorial Day we took Stephen to the pool for the first time.  He was almost 5 months old at the time and still a really sick little baby.  If you go back and read the posts from the end of May, you'll see posts about hospital admissions and trips to the ER.  It was a very stressful and scary time.  But I did manage to find a picture from our fist trip to the pool that I never posted last year.  Poor little guy never cracked a smile because he always felt so crappy.

And here's our little Superhero at the pool this weekend:

Despite having loved his first swimming class, he now hates going in the indoor pool.  So we were really worried that the same thing was going to happen this weekend at our outdoor pool.  But thank goodness, it didn't.  He LOVED it!  He played in the baby pool for a while and walked along the side of the pool hanging onto the edge, and then we took him in the big pool and he loved that too.  He let Bill put him on his back and his tummy and dip his head in the water.  It was so awesome!  He won't let us do any of that stuff in the indoor pool!  We ended up spending about two hours at the pool on Sunday and then again on Monday.  And it was nice for us to get out of the house and soak up some sun.  The little man has quite a little tan happening.  And how do you like those red shades of his?!??!  He loves to wear both his sunglasses and his hat and we don't go anywhere without them.  We get quite a lot of comments on those sunglasses!! :)

We also spent some time on Saturday outside as well.  We took Stephen down to Old Town, Alexandria and took a long walk (despite the hot temps) along the Potomac River checking out the boats.  Here are some pictures from our walk where we stopped to get the little guy out of his stroller and let him walk around a bit.  Oh and try to get him introduced to grass.  At this moment, he hates grass.  Every time I sit him down on the grass, it's instant tears.  So we need to get our little "city kid" aclimated to things like grass and sticks.  You'll also see that Stephen's getting so close to walking on his own!  He's now able to hold onto us with just one hand and walk, but I love it when he holds one of my hands and one of Bill's hands at the same time.  It's just so amazing to see him finally start walking!!

And hopefully I've figured this video thing out, because this one is really funny! It's Stephen chasing down Mabel in his walker with the help of Bill.  Stephen is laughing like crazy while poor Mabel is scared for her life!!

I uploaded it two different ways so that hopefully you'll be able to see it...either through YouTube (remember all of our videos can be found by searching under the keyword "LSchwartz531") or through Blogger.

Happy Memorial Day and thank you to all of our armed forces and their families!!!!!

What A Day!

Wow, what a morning we had today!! We had the first call to 911 while I was at work.  Talk about a heart attack!!  Actually it ended up being a very minor issue, and one that normally would have been handled without a call to 911, but thankfully everything is fine.

I was sitting in a meeting this morning at work when I got a panicked call from Stephen's nurse that he pulled his g-tube out. I've been waiting for this to happen, but had hoped it could have been handled a little better.  I'm not upset or mad at all, just glad nothing serious happened and thankful that the paramedics didn't transfer Stephen to the hospital!  Apparently, Stephen pulled his gtube out while his nurse was getting him dressed for the day.  She panicked because it never happened before with Stephen and called 911, then called me.  Thankfully we worked together over the phone to put it back in just as the paramedics arrived.  I could tell they arrived when I heard Mabel going crazy in the background.  She was so loud my boss sitting next to me in my cube could hear her! I guess because Stephen's nurse told them everything was ok, they took Stephen's information and left.

Thank goodness because that would have been a real mess had they transferred Stephen to the hopsital and serious panic on mine and Bill's part!  Bill actually drove home from work just to make sure everything was ok and to reassure Stephen's nurse she still had her job. Honestly, I was annoyed that she called 911, but I'd rather that she be cautious than not.  And now that it's happened, she'll know how to react the next time.  Because knowing Stephen's quick little fingers, there will be a next time!

Just another day in the life of the Schwartz's!!

And to top it all off, I had to pry Stephen off me this morning when I said good bye and handed him off to his nurse.  That was the first time he's done that.  He snuggled himself into my neck and didn't want to let go.  It made my heart melt.

Surgery Scheduled

Hi everybody and a very big Happy Belated Mother's Day to all the Moms out there!  I was going to post on Sunday, but decided to take the day off :)  Seriously, all we did was lounge around all morning, Stephen took a big nap, and then we went over to Bill's parent's house for a crab and shrimp feast.  YUM!!  It was a wonderful day!  Bill actually took me out Saturday night to celebrate Mother's Day, just the two of us.  We had such a great time chatting about the past year and reminiscing about everything we've been through. It's fun to laugh at all of the craziness and all the times we walked around the hospital late at night like zombies.  Oh, and the time I fell asleep in the cafeteria!  I think we sat and ate and chatted over drinks for more than 2 hours (a huge shout out to Cafe Milano!!).  We're at such a better place with Stephen and everything else than we were last Mother's Day.  He was still a very sick little pumpkin last year and now this year, we're really looking forward to what is coming next!

And we now have a date for surgery #4; Friday, June 15th.  It should a quick procedure, albeit, not very painless for poor Stephen.  But hopefully this will be the last surgery before transplant.  To date, he's been put under general anesthesia three times for a total of eight procedures; double nephrectomy, peritoneal dialysis (PD) catheter placement, feeding tube placement, incisional hernia repair, inguinal hernia repair, Mediport placement, PD catheter removal and placement of a new one, and incisional hernia repair again.  Thankfully, they've been able to combine a lot of procedures at one time to minimize the number of times he's needed to be under general anesthesia.

Our only hiccup for this next surgery will be if we can't get Stephen's sodium up.  We did labs on Friday and learned during dialysis clinic yesterday that his sodium has dropped, but his blood pressure is still elevated.  Typically, when your blood pressure is high, it means your sodium is high too.  So it's a bit of a mystery as to what is happening.  It would make sense if Stephen was fluid overloaded and retaining fluid, but he definitely is not.  And I definitely don't want to "dry him out" by switching dialysis fluids again.  The last time, they got him WAY TOO dry and he ended up getting really sick and we spent the day in the ER.  So we re-did his lab work to make sure there wasn't any fluke with the lab and hopefully the doctors will come up with solution.  Because if we don't get his sodium up, the anesthesiologist won't put Stephen under.  You might remember we had the exact same thing happen last year when Stephen was having seizures and he needed to be sedated for an MRI.  They wouldn't do it because his electrolytes were so out of whack.

Hopefully we won't hit any snags and all go go off on schedule.  We really need to get this done so the bladder stuff can be checked off the list and we can move forward with his transplant...our ultimate goal for the year!!!

What's Next

We finally had our urology follow-up last week and hopefully have an answer to Stephen's problems in the "man parts" department.  I know when this poor kid is older he's really going to hate me for this one, but....it seems the only way to solve the problem so we can move forward with this bladder stuff is to have him (finally) circumcised.  The hormone cream the doctor prescribed hasn't worked in getting the skin to loosen open and his pee hole (a very technical term) to open, so Dr. Pohl  has suggested we just do the circumcision now and that should solve the problem.  We always wanted to have Stephen circumcised, but when he was first born, he was too sick and there were too many other things going on for it to happen.  Then each time when he went in for surgery, we asked them to do it, but again were told there was too much going on.  So now it's finally time.  The only downside is that for Stephen, it's no longer just a snip snip, it's surgery under general anesthesia.  Boo!!  The doctor says it's a really easy quick procedure, 30 minutes, but I just hate the fact that it's under general anesthesia.  And the new Children's Hospital outpatient surgical center has not yet contracted with our insurance, so we have to have it done at the hospital.  Another big boo!!!  I HATE and completely DESPISE waiting in the hospital's surgical center.  It just brings back very anxious and stressful memories.  And I feel like every time we go in that hospital, we get stuck there.  I don't yet have a date for his surgery, but when I do, I'll be sure to post it.

So once we get the surgery done, than we have to wait about two weeks for him to heal, and then we go back to the hospital to have the VCUG where they'll insert a catheter and check to see what his bladder size and capacity is like.  Then it's back to Dr. Pohl's office to review the results and determine what's next.  Hopefully the answer will be that Stephen doesn't need to do bladder cycling and we'll be done with all of this and Stephen's transplant surgeon will agree and activate him on the transplant list.  That's what we're hoping for.  And then it'll just be smooth sailing until transplant!!

In other news, Stephen's growing and thriving!  He's trying so hard to walk and wants to be on his feet constantly!  Both grandparent's bought him a walker for him to scoot around their houses when he visits and he loves it!  He rolls around everywhere opening up cabinets and chasing after Mabel.  And he's super vocal now!  He loves to hear his only voice and makes this cool gargling sound in the back of his throat that he uses when he wants to get moving.  We call it his motor! And he's now able to tell me by pointing and say "m" sounds and mama when he wants something.  Which is so huge!  And he's become a big helper with his medications.  I put the syringes in his little tube and love to push the plunger down.  It's a really game for him and is so great for his fine motor skills.  I'm so proud of the progress he's made with his speech and fine and gross motor skills.  Some times I just sit and watch him and am in complete awe.  He amazes me more and more each day and sometimes the emotion and the feelings of what he's been through and what he has accomplished just totally overwhelm me.  And I swear each day, I love him more and more!!

Here are some pictures I took during our recent trip up to York to see Mimi and Poppy.  The first two were on a little ride at the Mall with Mimi while Mommy got to do some shopping.  And the last one was on a walk through the neighborhood.  We took two long walks throughout their big neighborhood and Mommy learned that it's time to slather on the sun tan lotion!! :)

And here was a super proud and precious moment from last night.  Stephen still isn't crawling, but it's such a blessing that he will now roll over onto his tummy.  He always hated being on his tummy probably because of all his tubes and surgeries.  But lately, he's been rolling over and sleeping short periods of time on his tummy which is such a huge milestone for him.  I was so excited last night, that I had to take a picture!  And then when Bill and I went in at 11:00 PM to give him his medications and hook up his over night feed, we found him cuddling with his monkey.  Monkey and pacifiers are his bed time staples!  That face just makes me melt every time!!!