Friday, April 20, 2012

All Things Urology and This Week in Pictures

Last week Stephen and I met with his new urologist, Dr. Pohl, from Children's National.  He's actually never seen a urologist before, so Dr. Pohl has been the one and only urologist we've ever seen.  At the request of the transplant surgeon, we sought out a consult to determine what is going to happen with Stephen's bladder once his new kidney is connected.  We know that the bladder acts like a muscle or a rubber balloon in that when it's not used, it shrinks.  So since Stephen has never used his bladder (his kidneys had zero function when he was born so he never made any urine), we know his bladder is super tiny.  Probably the size of a walnut!  Dr. Levine, the surgeon, is concerned (and rightly so) about what will happen once his new kidney starts working, and so has requested we get a urodynamic study done.  So Dr. Pohl suggested we get a VCUG done first which will determine what his bladder capacity is.  A VCUG is a radiology study where a catheter is inserted into the bladder, a dye is injected into the catheter, and the "X-ray" shows where the dye goes and how much the bladder can hold.  Our VCUG is scheduled for this coming Monday at the hospital.

If the results of the VCUG are not favorable, option B is to have a catheter placed in Stephen's bladder and do bladder cycling.  It's similar to his dialysis actually, but would involve me pushing saline into his bladder twice a day to help stretch it out.  It seems like a good solution except for one big problem; it requires an actual surgery to place the catheter and then Stephen would have one more open hole in his body and another route for infection.  Not something I really want to mess with prior to his transplant.  The last thing we need is anything setting us back from transplant.  So I'm pretty against Plan B and hoping that the VCUG will give the surgeon the information he needs and he'll agree that the catheter surgery is an unnecessary risk.

But we hit a big snag this week when we realized upon close inspection that Stephen's doesn't have a little hole for the catheter to inserted into (for lack of a better term....pee hole).  Apparently, it's common that if it isn't used, it closes up.  His pediatrician called it a mild adhesion.  So we've been prescribed some hormone cream that we have to use twice a day to try to get the hole to open back up.  if not, I guess Dr. Pohl will have to open it.  So this has set us back with this whole urology thing.  But hopefully we can get it all straightened out without any surgery involved.

In other "medical news" we've now started Stephen on a blood pressure medication because his blood pressure was steadily creeping up.  Last week it ran in the 140's and 160's which I think is even high for an adult!  And his red blood cell count is looking really good, so we've been able to come down on his weekly epogen injection.  And his TPH has also come down dramatically which means his vitamin D deficiency is in check and his bones are healthier.  All very good things!!!

And in "non-medical" news, we bought a new computer!!  It's a super awesome iMac and I LOVE it!  My old Dell was a total dinosaur circa 2004.  So now that I have a new fancy computer, I can easily   upload photos and videos with a snap of my fingers (even my iPad had gotten out of date because I couldn't sync it with my computer).  So here are some pictures from this past week:  

Here's Mr. Stephen helping me with some of my work

The little guy is now getting all four molars at one time, so there's a lot of finger chewing going on when there's no pacifier in sight

We also started a swim class this week on Wednesday evenings.  It's Bill and Stephen time and they both LOVED it.  And I had a blast just watching. Stephen had a really great time in the water and I'm hoping we can get him in the pool more than just one night a week.  

And for anyone that was curious about Stephen's "baby spanx," here's a before and after with his spanx.  It seems to be working pretty well and I think will be cooler for him in the Summer than the PD belt I just got.  

Wednesday, April 11, 2012

Movin' and Shakin'

Here are some more recent pics of my little man (and some with the big man too!) and a video too of him laughing.  There's something about a baby laughing that is just so funny and heartwarming.  It just makes my heart smile!!!

Here's Stephen working on some tummy time.  Still no crawling just yet, but he's really close!  He finally actually asks to get down on his tummy, so that's a HUGE step! And he's putting the arm and leg movements together.

Here are some more pics of Stephen standing.  He loves standing and is starting to take a few steps, so watch out world!  Next Monday we're taking a field trip for physical therapy to a soft play room to do some crawling and climbing up steps and to try out different walkers.  The one we have is great for standing, but it's a bit tippy, so we're going to go test drive some more before we buy a new one.   Plus Mr. Stephen LOVES the lights and sounds on this one and gets a little distracted and forgets to move his feet.  Typical guy...unable to multi-task :)

And here's a little video of Stephen standing in his crib, laughing like crazy at me behind the camera.  It's a little grainy and you can hear me making noises at Stephen, but I think you'll get the idea!

If you're interested in seeing any other of Stephen's videos, go to and put lschwartz531 in the search box at the top of the page and you'll be directed to all of Stephen's 27 videos.

Tuesday, April 10, 2012

CHOP Visit

I wanted to keep yesterday's post strictly about celebrating Easter so I didn't mention anything about our trip last week to CHOP.  But I've gotten a lot of questions from friends about the trip, so I need to share.  Yes, we had another visit with the doctor's at CHOP, but no, we don't have any new news to share about Stephen's transplant just yet.  The visit turned out basically to be a pretty routine doctor's office visit except that we were able to meet with both one of CHOP's nephrologists, Dr. Amaral, and the GI doctor that has been and will continue to follow Stephen's liver, Dr. Wen. 
Our appointment wasn't until 2pm, so we left in the morning and came back the same day.  And it actually worked out great.  We made it up to Philly in just over 2 hours so we had time to grab some lunch and take a walk around University City, the area of the city where CHOP is located as well as the University of Pennsylvania.  It was good we did because we found some restaurants and shops and a big CVS that's within walking distance to the hospital.  We know at some point we'll be spending lots of time there, so it's good to get familiar with the area.  Oh and I found a coveted Starbucks within walking distance too :)  Even when I worked in downtown DC and my employer provided FREE Starbucks coffee, I wasn't a Starbucks addict, but I've somehow become totally addicted.  Probably because there's a drive-thru Starbucks on the way to the hospital and the nephrologists office :)

Our appointment with Dr. Amaral went well.  We went over Stephen's current medications, his weight and height (15th percentile for weight, 5th for height), and his dialysis numbers and talked a bit about his hypertension.  For the past few months, Stephen's blood pressure has been pretty elevated.  It hasn't become a serious problem yet, thankfully, but we'll continue to monitor it and make sure it doesn't get crazy high.  We also chatted about timing for his transplant and how long kids his age typically spend in the hospital and need to stay in the area post-transplant.  Typically, kids like Stephen stay in the hospital from 7-10 days and then once discharged, need to come into the hospital for labs twice a week (yikes!).  So we're thinking that we're probably going to need to stay in the Philadelphia area for about month; at least Monday through Friday for Stephen and I (Bill will probably commute back and forth).  We can probably come home some times over the weekends, but to travel back and forth twice a week would be a lot.  And as much as we love staying in the Gift of Life House, it's tough staying there with Stephen since he has to sleep in a pack'n'play and we're all in the same room.  And maybe, if we found an apartment that allowed dogs, we could bring Mabel with us too. But we have yet to make a final decision about that.

We also found out some really interesting information from one of CHOP's dialysis nurses!  I had asked the nephrologists how they typically suggest parent's keep the dialysis catheter out of the diaper area.  We've been struggling with this for months now and haven't really found a good solution yet since I refuse to tape it to Stephen's tummy.  He's got enough tape already on his sweet little sensitive skin!  The dialysis nurse gave me some stretchy material that I could put around his abdomen to hold the catheter up; kind of like an ace bandage that's tied together at the ends.  Billy calls it Baby Spanx :)  So we've been using a big piece that stretches from the top of his diaper up over his catheter and his g-tube.  So far so good, but I also just ordered him a peritoneal dialysis catheter belt online today, so hopefully that might actually work even better.  But in having the dialysis nurse come in, she saw that we use a whole different catheter than they use.  Stephen's catheter and all of his dialysis supplies and machine are manufactured by Baxter and they use a different company; the only  other company with a home PD machine on the market.  She assured me though that they have some sort of connector piece that will allow Stephen's catheter to work with their machines in the hospital when we come for transplant so we don't need to haul our heavy-ass machine with us when we come.  yeah!  I took it one step further though and asked her if the kids had to bring their own machines with them when they come to the ER or are admitted to the hospital; and of course they don't.   How awesome is that?!?!  Every time Stephen gets admitted to the hospital, whether it's for surgery or in an emergency, we have to bring our machine and it takes forever for the nurses to track down the right supplies.  It's a total pain.  Just another difference between a big designated children's hospital and INOVA Fairfax.  Oh, and their nurses in the hospital can actually do dialysis as well.  They were shocked to hear that we have to do Stephen's dialysis in the hospital!

But I digress....we also got some good news from Dr. Wen, the liver doctor.  The lab work she requested came back normal which means that Stephen's liver is still functioning well.  It's large and course in texture and his spleen is enlarged as well, but everything is functioning just as it should.  So we're good to go on that front as well.  She even said we didn't need to complete the special high-level liver MRI before transplant, that it was something we could do post-transplant.  So the next time we will see her will be when Stephen is admitted for transplant. Yippee!  And we were able to get some labs done before heading home, so all-in-all it was a successful trip!

Now the only thing left on our end to wrap up for transplant is the urologist appointment.  We have the appointment this Wednesday (tomorrow), smack dab right in the middle of nap time.  So it should be interesting! 

Monday, April 9, 2012

Happy Easter

We had a wonderful Easter Sunday this year in York at my parent's house with my sister, brother-in-law and their two girls.  This Easter certainly was a departure from last Easter!  This year we were able to take a deep breath and actually enjoy the day and not stress out about Stephen being in church and picking up germs.  Last Easter we had just gotten home from the hospital a few weeks prior and just three days after Easter, Stephen got his first bout of peritonitis and consequently, his first hospital admission since coming home.  We weren't sleeping, stressed out about keeping him healthy, and still learning how to figure all of this out.  And although we actually had a sleepless night Saturday night at my parent's house (Stephen got off his game a bit traveling up to PA and decided he needed to be held all night long), it was still great that we were able to pack everything up and head out of town for the night.  Of course with the no sleeping thing, we did have some moments of concern that we would have to unhook him from dialysis in the middle of the night, pack up the car, and get him to the hospital which was a little scary.  But we know that if we can calm him down, even if for short periods of time, then he doesn't need to go to the hospital.  It's only when he's completely inconsolable.  And wouldn't you know it as soon as we got up in the morning he's was happy as a clam sitting on my parent's bed watching cartoons, eating goldfish while we got ready for the church!

Unfortunately, we never got a family picture before or after church (we were running late and then Mr. Stephen crashed after church), but my Mom got a decent one of Stephen and his cousins, Norah and Chloe, after church.  The girls love him so much and only refer to Stephen as "Baby Stephen."  It's so cute!!

And here's one we snapped before church of Stephen with his Easter "basket."  The Easter bunny brought Stephen a new football along with lots of jelly beans an candy for Daddy!