Tuesday, August 28, 2012

Test Results

We got our test results back from the University ofPennsylvania yesterday and got some good news and some unexpected news. The good news is that both Bill and I arecompletely healthy! They literally testyou for almost every possible well-known disease/cancer/sickness and thankfullyboth of us passed with flying colors. The unexpected news was that they want my kidney and not Bill'skidney. I won't go into all the detailsas to why, but it definitely has thrown a monkey wrench into our plans of howwe were going to tackle this whole thing; physically, mentally, andfinancially. So yesterday was a bit ofstressful day in the Schwartz house. Thehard part throughout this whole transplant process has been all of theseunknowns (I'm pretty sure I've talked about this before). Not knowing how Stephen will get a kidney,when it will happen, how long we'll have to stay in Philadelphia, what it willcost us, how Stephen will do with the surgery, now how I'll do with thesurgery, and the list goes on and on. Andin the meantime, we've been attempting to buy a house. Probably not a good idea to take on such aHUGE task, but we've outgrown our 1,100- square foot condo (a long time ago) sowe thought we would pull the trigger and do it. But after getting the news from UPenn yesterday, we pulled back on thetrigger just as we were about to put an offer in on a house. It's just too much stress and too muchuncertainty to take such a giant leap. Wepretty much feel like the wind has been taken out of our sails for the timebeing until we have some more stability in our lives.

I did however get some encouraging news from CHOPthough. I called them to update them onthe test results and in doing so asked Jo Ann about where we stand on thetransplant list. It turns out that yourstanding on the list doesn't matter at all until a kidney actually becomesavailable and then the computer generates a list of people based on the donorinformation. So for one kidney Stephenmay be 3rd on the list, where he would be 100 on the list for another. That's key to understanding where you mayfall among all of the other recipients. But what was very encouraging is that since Stephen was listed on July27th, there have been three kidneys come available; not just the one wereceived the call about. The first weknew about and got the call that Stephen was being cross-matched. The second wasn't a close match at all and sothere was no cross matching done in relationship to Stephen. And the third, was a good enough match onpaper that the surgeon evaluated it for Stephen. But in the end, the donor was consideredhigh-risk and therefore the surgeon passed. So it's encouraging to know that in the month that Stephen has been onthe list, there have been three donors! Those are pretty good odds I think!

And I'll be going back up to UPenn next Wednesday to meetwith the nephrologist, so then I'll formally be added to the registry and we'llbe listed as an official A+/O+ swap. Sofor the time being the saga continues :)

But Mr. Stephen is doing great!! His infection is all gone and he's so close to walking on his own. He actually blew me kisses for the first time when Ileft for work this morning. A very proudMomma moment!!! Now if the little buggercould just sleep the whole way through the night I'd be an even happier Momma!

Friday, August 24, 2012

Poked, Prodded, and Tested

Lots of things have been happening in our house over the past couple of days!  Bill and I actually got back yesterday evening from an overnight trip up to Philadelphia to complete our testing to be entered into the National Kidney Donor Registry.  The testing was part of the process so that we could be part of a paired kidney exchange, where another donor would give Stephen an O+ kidney and in turn, either Bill or I would give them an A+ kidney.  It's all very exciting because this is what we had hoped we could do all along!! 

Originally when I got the call last week, they were going to test us both at the same time.  Then on Friday, I got another call saying that only one of us could do the testing, so we decided that Bill would be the first tested, and then if something showed up in his tests that indicated he couldn't be a donor, then I would do the testing.  But when we got to there yesterday morning, they decided to test us both since we live out of town.  The testing and the donor work-up and surgery all take place at the University of Pennsylvania, which is directly adjacent to the Children's Hospital of Philadelphia (CHOP).  And just like CHOP, UPenn didn't disappoint!!  The place was unreal!! Not only was the building itself super cool, but everything worked like clockwork!

We started off at 7:30 AM with registration, then moved to blood work around 8AM.  There, they took about 20 tubes of blood from each of us.  It was a crazy amount of blood, but the phlebotomist at the lab, was a gem!  She worked so fast and kept your mind off the needle and everything that it was a breeze!  After that we had to do a 2 hour glucose test.  For those that don't know, it requires chugging a small bottle of a syrupy, sugary, orange juice-like drink.  Then waiting an hour and having another blood sample taken, then waiting an additional hour for another blood sample.  But in between blood tests, we met with the transplant coordinator to go over the "official" paperwork, did an EKG, met with social work, and then had a chest X-ray.  In the end, we were completely done by 11:30 AM and off to have lunch...finally!  Bill had to fast overnight Wednesday night into Thursday morning and I felt bad eating in front of him, so thankfully I fasted too!

Since we had to be there so early in the morning on Thursday, we drove up Wednesday night and spent the night at UPenn's Transplant House; UPenn's equivalent of the Gift of Life House.  It was very nice and located within walking distance to the hospital which is really nice.  The house itself is smaller than the Gift of Life House with only 12 rooms, but our room was huge, and it had a really pretty outdoor atrium/courtyard in the middle.  

Both Stephen and Mabel had a sleepover at Grandma and Grandpa Schwartz's house Wednesday night and both loved it!  And oddly enough, the road trip for Bill and I was like a micro-vacation despite spending half the day in a hospital.  It was nice just to hang-out together with no responsibilities except for ourselves.  It's sick, but it's true.

We also found out when meeting with the coordinator, that there isn't currently a swap for us; meaning an A+/O+ match isn't currently available, but the typical "wait-time" for a swap or chain is about 6 months.  Which is pretty encouraging.

If you've been following our story for a long time, you might be thinking...."wasn't Bill B+ and Lindsey A+?"  And you'd be correct.  All along, we thought Bill was B+ based on his blood work that was done when Stephen was in the NICU (the test result got buried in Stephen's hospital records, so we were going on memory).  But during our last visit to CHOP, they took some blood to double check our blood type and it turns out that we're both A+!  It's funny because as we were heading to the lab that day, I said to Bill, "wouldn't it be crazy if I some how screwed this up and you were in fact O+?!"  It'd be a terrible mistake, but the best-worst mistake I ever made!!!!  I got a call a few days later from CHOP saying he wasn't B+, but A+ and had a pretty good laugh about it!

So what does all of this mean??  Well...we're still testing non-related living donors (wonderful friends, acquaintances, and complete strangers who have offered to be donors for Stephen), Stephen's still listed on the donor list (we could get a call at any moment), and now we're waiting for a kidney swap as well.  So we're hitting this thing from all three angles!  And whatever happens first, will happen first.  We're still hopeful that this transplant will happen before then end of the year, and with all of our options out there, I'm positive it will.

And what's even more encouraging...one of Stephen's kidney's friends, Faith, who is about two months younger, received her gift of life from her Mom, Andrea, just a few days ago.  They live in Seattle, but Andrea and I became friends over email back when we were both pregnant.  I probably talked about them way long ago!!  Faith got on the escalated transplant tract after having to be put on hemodialysis a few months ago.  So it was much needed!  But both Faith and Andrea are doing great!  Faith has done great so far and the pictures I've seen are just amazing!! You'd never know this darling little girl, just went through a major surgery.  It's so encouraging for us to see and I can't wait until it's our turn!!!!!

Saturday, August 18, 2012

Photo Dump

I finally just downloaded a whole bunch of pictures from my camera and found some really cute shots of Mr. Superman.  Thought you all would enjoy some gratuitous baby photos!!!

Tuesday, August 14, 2012

Infection Update

Thanks to everyone that's been asking about how Stephen isdoing!! He's doing really great, althoughhe does still have the infection. Thankfully it hasn't gotten any worse or spread any further from what wecan tell, but he's still taking all three of the antibiotics and we've now hadto add heparin to his dialysis bags to help break up some of the"junk" coming out his catheter. The preliminary lab results came back last Friday that the bug theyfound in his tunnel was most likely a water-borne bug. Meaning Stephen probably caught this thing atthe pool. Which was a major disappointmentbecause the pool was the one fun, normal thing we could actually do and I hadbeen really diligent about asking the lifeguards at the pool if the chlorinelevels were right and had always showered him off and cleaned his site rightafter we got out of the pool. There wereeven a few times this Summer that we went to the pool but couldn't get in thewater because the chlorine wasn't right. And that says a lot because we only went to the pool a handful of times! And to make things even more confusing, nowthe doctors are saying he shouldn't be in salt water. We had always been told that salt water wasthe best, but now it's not??? It's sofrustrating!!

Regardless, there's no pool until his infection is cleared up for sure andsince we're nearing the end of Summer, thankfully it's not a big dealanyway. But it's just another reason ina very long line of reasons why Stephen needs this transplant ASAP!!! We've got to get rid of this dialysis. He's just bound to get more infections, andevery time, it's a big setback. And theolder he gets, the more normal things need to get for him. He's really so aware right now of everythingthat's going on and hates me having to change his dressings three times a day. Ieven caught him pulling up his shirt the other day to look at his tubes. And thetape is really starting to take a toll on his skin, as are these antibiotics!

We had labs yesterday and have dialysis clinic tomorrowmorning (our monthly 2 hour appointment), so I'm sure they are some changescoming with his calories/feeds/meds. Buthopefully they're all good changes and no bad ones!! Fingers crossed!!

And Bill and I scheduled our appointments today with theteam at the University of Pennsylvania to do our testing for the paired kidneyexchange. We both go up next Thursday(late Wednesday night to be there first thing Thursday morning) for a batteryof tests and then hopefully one of us will match for another person. We still have no other news on the transplantfront, but are still hopeful that something will come up in the next fewmonths.

Wednesday, August 8, 2012

Trouble in Exit Site City

I wanted to write this post last night after I got home from work to update everyone on the rest of our trip and the happenings since last week, but during pajama/get-ready-for-bed time, things took a turn. It seems like right around 8 PM is when things always go awry if they're going to go awry.

Last Friday when I changed Stephen's PD cath dressing, we noticed that it was looking a little red. His exit site is always beautiful, so it was unusual to see it a little "angry." I called his nephrologist, and they prescribed a topical antibiotic just in case the exit site was starting to brew something. I started that Friday night and by Saturday, it was starting to look less red. And then Sunday and Monday it looked about the same.

But last night when I changed it after work, it was really ugly! There was a big nasty scab and the skin was super dooper red, so I paged the on-call doctor to find out what to do. In case anyone is reading that has a child on peritoneal dialysis or is just interested in what these things look like, here's a picture. I always take a picture of this stuff in case the doctor wants to see. Sometimes technology really works to our advantage!

Sorry if this grosses anyone out!!

In any case, the doctor had us come in first thing this morning so they could look at it and take a few cultures. Sure enough, Stephen has what is called a tunnel infection. It started out probably as just some germs on his skin, but it's worked it's way into his exit site. And the worst part was, it was clearly very painful to him to have the nurse clean it today :(

They've started him on three different oral antibiotics until we know more about what's growing in his catheter tunnel. Best case scenario is we kill off the bugs within the next couple of days. Worst case; they have to pull his catheter. But we're not even going to think about worst case! So now let's all do a "kill the catheter bugs" dance or prayer!!!

Friday, August 3, 2012

Baseball game

While Bill is in North Carolina for a few days golfing, Stephen and I are enjoying some time away from home at Mimi and Poppy's house.  We spent the first evening in York at a York Revolution baseball game; Stephen's first.  He had a great time watching all the people and being entertained by his two cousins.  And part of the fun of the game on Wednesday was that it was Downtown's birthday (the team's mascot), so there were lots of other mascots there to celebrate!  Unfortunately, Stephen wasn't really a fan one of them, the Lancaster Barnstormer's masctot, Cyclo.  He was big and fury and red and scary!! 

And Stephen also experienced his first carosel ride at the game.  He wasn't a big fan of the carosel either (didn't want anything to do with the horses), but was a trooper until the ride stopped.

But I have a good feeling there will be lots of baseball games in Stephen's (and Mommy's) future.  He's got some good baseball genes from both the Noll and Schwartz men and has already got himself a pretty good arm!