Monday, February 27, 2012

Thursday ER Trip

Oh what a crazy week and weekend it's been!! Wednesday morning was spent in the pediatricians office and then in dialysis clinic for a few hours. Thursday was spent back at the nephrologists office and then in the ER. And then Friday night and Saturday, Bill and I were both infected with the plague aka the stomach flu.

I wrote up a whole post about Stephen's ordeal while we were in the ER, but of course my phone ate it. It's just the kind of week it's been. All while we're trying to get ready for our trip.

The shortish version of the story is that we realized last week at CHOP that Stephen's blood pressure has been high. So at dialysis clinic, the doctor thought that it was probably because he's retaining fluid and possibly getting too much sodium from both his solid food intake and from the sodium supplement he gets in his formula. So she cut out his supplement and put him on a salt restricted diet and switched his dialysis fluid to a stronger concentration to pull off more fluid that night.

When I picked Stephen up Thursday morning out of his crib, I instantly knew something was wrong. His eyes were sunken and he immediately began gagging and throwing up. Basically, he got over dialysed Wednesday night and got super dehydrated. I tried to give him extra fluids in his peritoneum and belly at home, but it didn't work. He kept throwing up and was just so sick! My mom was visiting, so we packed up some of his things and took him to the doctors to see what they could do before we took him to the hospital.

Nephrology tried giving him some more fluids in his peritoneum and some IV too, but that didn't work either. He became more agitated and continued to throw up, so they sent us to the ER. By this point I'd say he had thrown up more than 10 times since that morning.

Once in the ER, they were able to give him some anti-nausea drugs, more IV fluids, and check his electrolytes. Eventually the poor little guy calmed down and fell asleep and was finally able to keep some pedialite down. And since his electrolytes looked good, they sent us home. Thank god!!!

Oh and I can't forget to mention my "Mom of the Year" moment where I caught Stephen's g-tube extension on the edge of the chair and yanked his button right out. A winning moment in the front of all the doctors and nurses for sure.

Stephen is slowly but surely getting back to normal. This morning was the first morning he was able to take his full feed at a normal rate. But he's been super irritable. I'm thinking it's a combination of the four teeth coming in and the fact that he's frustrated because he still can't move on his own. He's getting really good at standing, but still no crawling or walking. Mimi taught him this great new trick of standing up in his crib and holding onto the side. Way to go Mimi! :)

On a different note, Bill and I are back to normal and scrambling tonight to get packed and get everything ready to leave Stephen for a few days. My goal for the trip is to relax, unwind, refresh, and to have a couple of cocktails at the pool. This will be the first time that Bill and I will get away together for more than 3 days since our honeymoon! Kinda pathetic, but that just makes us all the more excited for vacay!!!

Have a great week and hopefully I'll have some cute photos to share of Stephen from the Grandma Team while we're away!

Monday, February 20, 2012


The outpouring of support for Stephen and to try to find him a kidney donor has been incredible!!!  I just wanted to thank you all so much for continuing to read and share our journey with us and for caring so much about Stephen and our family that you have shared our story with other people and they in turn have shared it with their friends and so forth.  I would have never expected to receive as many emails as I have regarding our search to find a kidney donor for Stephen.  It's truly amazing and I'm in awe of the kindness and generosity of people, a lot of them complete strangers!  And I have to mention the power of social media!!!!!  I haven't always been the biggest fan of Facebook and to be truthful, the Internet, because sometimes it's causes more harm than good, but in this case, it's been mind blowing how Stephen's story has made it's way through social media to other parts of the world.

At first we were actually fairly reluctant to ask people for their help.  Both Bill and I actually felt a bit awkward about asking people if they would be interested in donating their kidney to Stephen.  I mean how do you really ask someone for an organ?!?!  It's one thing to be an organ donor once you die, but it's a whole different ball game to ask someone for their organ while they're alive!!! We really had to take a step back and look at the bigger picture and think about what we would do if a friend, acquaintance, or stranger was in our shoes.  So over the past few days, I've had to really get over that fear of asking and talking to people about it, and just do it.  They want to help and I want them to help, so that's all there is to it, right? Right.

We did some labwork today and we have our now monthly dialysis clinic appointment on Wednesday and Stephen's third Synagis shot of the season this week too.  And my Mom is coming down on Wednesday to do some learning and training on Stephen's dialysis.  Bill and I are actually going to take a little vacation at the end of the month to Florida.  Crazy, I know!!!  But we could be more excited!!  It's a semi-work trip for Bill and I'm invited as well, so we thought, why not?  We desperately need some time away!  I've already done training with Bill's Mom, so now I just need to get my Mom up-to-speed.  So I've been working on making sure Stephen's medical supplies and medications are all stocked up so they don't run out of anything while we're gone and that all of his insurance paperwork is done since his Medicare Part D will switch over while we're gone.  And if anything happens, which I know it won't, I'm only a short plane ride away!

In case anyone was ever curious about what some of Stephen's  medical supplies look like....I got our shipment today of his dialysis supplies for the month.  Here's what one month of just his dialysis supplies (dialysis solution bags, tubing, caps, and drain bags) looks like.  We actually store it in the corner of our bedroom.  Not an ideal place, but it's better than the dining room!

Friday, February 17, 2012

Official Kidney Transplant News

The day has finally arrived....Stephen is officially listed as a kidney transplant receipt!  We left CHOP yesterday knowing that the transplant committee would  be meeting later that afternoon to discuss Stephen's case and would likely decided that he would be listed.  There were still a few unknown pieces of information that could potentially delay his listing, so I didn't want to jinx it by spilling the beans too soon.  But based on his preliminary blood work and what they saw when examining him and his most recent test results, they decided (in the doctor's words) that Stephen is doing excellent and there's no reason why he can't be listed.  He's currently listed as inactive status until we can complete a urology study on Stephen's bladder.  The surgeon would like to know if Stephen's bladder will work and be sufficient enough for a new kidney before putting it in.  He's never had to use his bladder, so who knows what the little thing would do.  It's a perfectly good request, so once we get that completed and if everything looks good, he'll be activated!

Since kidneys come up fairly quickly for kids, we've decided that we're going to spend some time over the next couple of  months to see if we can find a living donor for Stephen.  Stephen is O+ and no one in our families are O's, so we are asking friends and family to help spread the word about Stephen and his need for a kidney.  Anyone with either O+ or O- blood and is under the age of 50-55, is a potential donor.  If we're unable to find him a living donor, then we'll take the best match that comes up from a deceased donor. Thankfully, Stephen does not have any antibodies (they can accumulate from things like blood transfusions, which he's had), so we hope we'll be able to find a match without too much trouble.  If anyone is interested in being tested to see if you are a match, please feel free to email me.  I'm also going to (attempt to) post some more information in a link on the right-hand side of the blog so that it remains a permanent fixture on the blog

I cannot begin to even describe what this feeling feels like.  It's a huge mix bag of emotions (like so many things we go through)!! I'm super pumped and excited and joyous and can't believe my 13 month old little boy is so healthy that he's ready for transplant!  But also a pretty nervous and cautious about the whole thing.  There are a lot of unknowns that won't be figured out until the surgeon actually lays his hands on the donor kidney and opens Stephen up to see what kind of toll the disease and infection has taken on his little body.  Transplant is not a cure and it's not a life-long fix, but the risk and scary stuff is so overshadowed by the idea and thought that Stephen will live his life dialysis free!!!!!!!!  FREEDOM!!!!  For both him and us too.  And less medications and less stress and less

The really funny part about our visit at CHOP yesterday was that Stephen was a real crank monster for most of the day.  No one slept very well the night before, which lead to a cranky Stephen in the morning.  We spent Wednesday night at the Gift of Life House, so Stephen slept in a pack-n-play, which is definitely  not a good substitute for a crib.  He tossed and turned all night.  But he really turned on the charm when it mattered the most! Right as the surgeon walked in the room, he sat up straight and shot him a big grin and smile and Dr. Levine couldn't believe how big he had gotten and how alert and good he looked.  He didn't even examine Stephen!  He's changed so much since the last time they saw him in November.  Not only is he bigger, but he's eating solid foods now and is doing so much better with all of his developmental milestones.  So I think they were very happy with what they saw.

The days at CHOP are very long and there's a lot of hurry up and wait, but each time I think will just get better and better.  Next visit is the first week in April, and we're coordinating it so that we can be part of the combined kidney and liver clinic; the only one of its kind in the country.  So I'm pretty excited about that.  And at the same time, we're going to get a tour of the surgical/recovery unit.

We've definitely decided that the Gift of House is where we're going to stay while Stephen's in the hospital.  It's just so nice and welcoming and comforting and the amenities, such as meals and snacks, that they provide are just amazing.  Plus, even in morning rush hour traffic,  it only takes us 15 minutes to get to the hospital.

Well I've sort of written a book, but there's so much more info I could share :)  But I won't bomber you with too much information all at once.  Before I go, here are two pictures from our visit yesterday. 

Here's Stephen taking his own blood pressure.  He's very advanced for his age :)

And here's the little guy snuggling with monkey and Dad.  Poor guy was so tired and slept the entire way home in the car.

CHOP Visit

We had an awesome day at CHOP yesterday and I'm dying to share our news with everyone! I just need some time to sit down to and write it all up and gather my thoughts together. So this afternoon when Stephen goes down for a nap my number one job is to update this blog! I promise! Plus by then, I hope to have final and ultimate confirmation from the transplant team about the things we discussed yesterday.

Thanks everyone for your patience!

p.s. If you happen to be on Facebook, you can get a sneak peak into our day on my sister's page; Jessica Noll Sweigart.

Sunday, February 5, 2012

Super Bowl Sunday

Last year we were sitting in Stephen's room cheering on the Steelers on Super Bowl Sunday. A few of Stephen's nurses were Steelers fans, so we turned his room into a mini Steelers shrine. Well actually, his room was a mini sports "pub" full of lots of sports paraphenlia from Penn State to South Carolina to LSU and even the Giants! So since Stephen actually wore a Giants jersey at one point during his stay in the NICU, we're rooting for Eli and the NY Giants tonight.

I was so excited because I thought I would get a really cool sort of before and after shot of Stephen today in his Giants jersey. But I realized last night that I packed away the jersey with the rest of his things from the NICU and put them in our storage unit :( One of the downsides to living in 1,100 square feet. And of course they're closed on Sundays.

Although I was unable to get a picture of Stephen in his Giants jersey tonight, I still thinks it's a cool comparison and reminder as to how far Stephen's come in just one year. You'll be amazed!!!!!

Here's Stephen last year in the NICU. This was taken at the end of January during his fight against pulmonary hypertension. Which he totally conquered!!!

Here was a little piece of the paraphernalia we had hung in "Stephen's Pub"

Sorry these pictures aren't very good, but here's our little football fan cheering on the Giants (or Patriots depending on who you ask...I picked the Giants, Bill picked the Patriots):

We're working on signaling a touchdown. I'm hoping we'll have it down by the time football season rolls around again in August!

I hope everyone has a fun and safe Super Bowl Sunday!!!!

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!