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.  


  1. All our prayers are with you and Stephen this Monday!! He looks and is soooooo wonderful!
    Grandma and Granddad Schwartz

  2. Hi Lindsey,
    Uncle Dick and I just returned from a week in Dayton. We attended the 70th Doolittle Raiders Reunion which was awesome. Glad to see that Stephen is doing great--Look like he enjoys "Daddy time" in the pool. We definitely see more of his Mommie in him since he is getting older. We will be keeping you in our thoughts and prayers--especially on Monday. We hope you have a successful visit with the doctor.
    Aunt LuAnn

  3. He is so totally adorable. Someone made me aware of your blog. I read the entire thing with such a full heart. You are an amazing mother. Thank you for sharing this. My thoughts are with you. Best, Bobbe Nemes Ragouzeos

  4. He well do just fine. WE are crossing our fingers and hoping for the best for all of you.

  5. Hi I was wondering where you got your sons pd belt and spanx. My son is 1 month old and was born with renal failure due to a blockage. Thank you so much. Your son is beautiful.

    1. Hi SD! So glad you found the blog! Shoot me an email at and I'd be happy to send you what I have left over and share more info on the pd belt and "spanx!"

    2. I too would like more information about the pd belt and spanx. I've been looking for something like this for my 10 month old!