Thursday, July 19, 2012

Not As Expected

Today has been another roller coaster ride of emotions and I've found myself on the verge of tears a few times.  Not because there's anything"wrong" with Stephen right now, but because of the situation we are in.  From the outside everything looks great.  Stephen's healthy right now, he's progressing wonderfully in terms of speech and motor skills, and has become a beautiful little boy.  But some days, it's just overwhelming what we've been through and what we still have to go through.  There are still mountains to climb not only in the near future but our distant future as well.  And we're now just in a holding pattern which is difficult.  And it doesn't help that I'm 100% type A and love to plan ahead...for everything.

Last week Stephen's VCUG went really well.  I tip my hat to the whole crew of folks at Fairfax hospital who helped out during the procedure.  The radiology tech was great and she remembered Stephen from past visit, the child life specialists who we hadn't actually met before was fantastic, the nurse who put in his catheter was good and quick, and the radiologist explained everything as she was taking pictures and was very kind.  Sometimes things don't go as smooth at the hospital and I had prepared myself for the worst, but they did great!!

Stephen did pretty good as well.  Bill came along to give me an extra set of hands which was a HUGE help!  Having an extra person to occupy the little person is key.  And while I talked with the techs, nurses, and doctors, Bill got him oriented to the room which I think helped.  He did cry a lot and hated to be held down the whole time, but all-in-all, I think it went really well.  And when I picked him up after the procedure was over, he peed on me (expelled the remaining fluid they pushed into his bladder)! Which was pretty darn cool!  Most Moms don't get to say they like being peed on :)

We did learn though, as expected, that Stephen's bladder is teeny tiny.  His bladed only held about 35 cc's of saline before he started peeing it back out.  A bladder of an 18 month old should hold about 135 cc's of fluid.  So we're way off in that regard.  But that's exactly what we expected.  He's never ever used it.  But being able to see his bladder and the ureters fill and empty was an awesome sign.

Today, we had our follow-up with the urologist, Dr. Pohl, to go over the results.  After the VCUG, we kind of assumed that Dr. Pohl would tell us that the results were exactly as he expected them to be and that from a urology stand-point, Stephen was cleared for transplant.  That we wouldn't need to put a catheter into Stephen's bladder and stretch it prior to transplant.  But that's not what happened today.  Dr. Pohl looked at the film, came back in, and told me that he'd like to confer with his other colleagues before making a decision on whether or not we would have to go forward with the catheter surgery.  I honestly was shocked.  I just didn't expect him to say that.  I'm sure he saw my face pretty much fell when he told me that.

What I didn't realize before today, was that if Stephen's bladder doesn't fill and empty appropriately after the new kidney is connected to the ureters, the urine could actually back up into the kidney and essentially "kill" his new kidney.  I asked him if there's anyway to "install a valve (like my lay-man's terms?)" on the ureters to let the bladder fill slowly and stretch.  Unfortunately the answer was no.  All of the urine has to enter the bladder all at once.  So Dr. Pohl is going to chat with some folks about what they think and they're going to make a decision by Wednesday/Thursday of next week.

So the waiting game continues.  Another week until we know what's going on.

Ultimately, I learned something new today so that was good, but I wish this whole process could be sped up a bit.  We started the urology stuff back in April and it's now mid-July, and it still hasn't gotten straightened out.  Everything's on hold.  The transplant is still on hold and that means our lives are still on hold.  We can't make plans for the Fall (trips, weddings, football games), we can't move forward with trying to buy a house, I can't make decisions on whether or not to sign Stephen up for music/tumble classes or sign him up for co-op playgroup.  It's all these decisions that most people make constantly and never think twice about, but for us, we can't make them.  And it's so damn frustrating.

And to get back to where I started off at the beginning of this post, we want this transplant to happen a billion percent, like yesterday, but at the same time, it's so scary.  There's no telling what will happen.  Will Stephen do well in the surgery?  Will they find out his liver is a total mess?  Will his new kidney make life easier?  When will he be healthy enough to leave the hospital?  And how long will we have to stay in Philadelphia afterwards? And ultimately, will he remain healthy for 15-20 years?  Recently there was a little boy with ARPKD who received his transplant from his Mom in February and he out-of-the-blue started running a fever and two days later passed away from a heart condition.  These are worries that I carry with me constantly.  Every minute of every day.  Most days these thoughts are in the way back on my mind and rarely creep out to the front.  But today, for some reason, they're right there, front and center.

I know that no matter what happens, we'll get through it like we always have and Stephen will take it all in stride.  He is, after all, Superman!!!


  1. Always remember .... Stephen IS Superman, but he has great parents, also. Lindsey ... you and Billy are going through so much. Many people who don't even know you two well, also think you both are SUPER.

    Take care of each other, be good listeners with each other, and remember that after all .... you are all just human.

    All our love to you three ..... Mom & Dad

  2. Hang in there, mama!! You are such an inspiration. Prayers going up every day for you, Bill, and sweet Stephen.

  3. Go ahead and have a pity party. You deserve it. You don't always have to be amazingly strong and positive. You've done a great job and will continue to do so, but every so often, it is just fine to be frustrated and crave some normalcy.