Friday, June 28, 2013


Superman did it again!! Biopsy results just came in and there was NO sign of rejection! The doctors will continue to monitor his antibodies, but for now we are celebrating and going HOME!! First thing in the list once we get home....going to the pool! Oh, and have one very large and very cold beer!

Thursday, June 27, 2013

Biopsy Today

Stephen was an add-on to the surgery schedule today and they ended up taking him first. Woke us all up very early this morning! He went back to the OR at 8:45 sitting up in his bed and blowing kisses the whole way down the hall. 💋❤💋❤

Tuesday, June 25, 2013

Biopsy News

Well I sure didn't think I'd be writing this post tonight; at least not this soon after transplant and especially since Stephen has been doing so wonderfully the past couple of weeks. We were admitted last night at CHOP and they repeated his blood work this morning to double check that his creatinine level was as high as it had been on Monday. Turns out, his creatinine fell back down. So we spent the morning thinking we would go home this evening after Stephen received an IV fusion of neupogen; a drug that helps white blood cell production. But later today, we got some not-so-great news from the transplant docs. 

At one month post-transplant, the protocol tells the doctors to run some tests to check to see which antibodies the recipient has formed and they compare them to the donors antibodies and the antibodies the recipient had before transplant. Stephen's results showed that his immune system is now producing lots and lots of antibodies that he did not have prior to transplant. Basically, despite his immune system being suppressed, it's working on overdrive, trying to fight off the new kidney. The kidney is functioning perfectly; his BUN and creatinine are perfect, but Stephen's immune system is working in a way they couldn't have predicted it to. The bottom line is that he is in the very beginning stages of rejection. More specifically, what is called AMR rejection. It's so complex, and I'm only starting to try to understand it. But what I do know is that they are ways the doctors can fight off the rejection and reverse it.

So later this week (we think), hopefully on Friday, they will remove the stint and while Stephen is under anesthesia, they will biopsy the kidney to determine the extent of the rejection. Hopefully they've caught it soon enough that it can be managed with medication. If not, he will need to undergo plasmapheresis (stuff that is still over my head for the time being). However, we know, once again, we are the right place, and we have the utmost confidence that the doctors here at CHOP can get this under control. It was very unexpected news, but we're really hopeful and trying to remain super positive that this will come out in our favor.

Unfortunately, right now we don't yet know when things will happen or when we'll go home (could be tomorrow morning or could be next week), but we're hoping to be discharged in the morning following labs and then will return on Friday for the surgery. 

On the flip side, at least Stephen has been having a good time here at the hospital this time (I thought he was going to freak when we got here, but he immediately started playing ball)! He was bouncing off the walls today, running up and down the halls, and was able to get for a few walks. 

Monday, June 24, 2013

Prayers Please

Please say some prayers for Superman. His blood work wasn't so great today (creatinine was up and white blood cells are down) so they're admitting him tonight at CHOP for a kidney biopsy tomorrow. Hoping that all of this was caused by a lab blunder and they'll send us home tomorrow. Fingers and toes crossed!! 

Well at least we had a super fun weekend at home. Here are some pictures I wanted to share.

Wednesday, June 19, 2013


There's not a whole lot to share tonight except that things are going so awesome! Stephen's prograf level on Tuesday was great, his white blood cell count is coming up and they removed the remainder of his staples. So all around, things are going great and we get to move home on Friday!!! There's not much else to share in words, but I think these pictures speak volumes for how far Stephen has come in the past few weeks and just how great he's feeling with his new kidney. Some of the pics are from our trip home over the weekend, and some are from a quick trip we made to York yesterday and today (we were lonely and bored in our Philly apartment). This was Stephen's very first time running through a sprinkler! He loved it and had so much playing with his cousins running around the yard. It was hard to say goodbye, but we'll hopefully see them soon at our house in VA.

Enjoy! xo

Friday, June 14, 2013

Great Ending!

Bill took the train back up to Philly from Virginia late Wednesday night to go with Stephen and I on a marathon CHOP visit yesterday. We had lab work, transplant clinic, a visit with the nephrologist, an ultrasound of his bladder, and an appointment with urology. It's no easy feet occupying a toddler at a doctors visit, let alone all those appointments and right in the middle of nap time. Thank goodness Bill was able to be there and thank god for iPads!!

The labs and appointments went great and Stephen turned on the charm like always for the doctors. He now calls Dr. Baluarte, "B" and lets him pick him up, lay him on the exam table and do a total body exam. We just sit and watch from across the room and smile. It's so awesome to see your child do well with the doctor and actually participate in the exam (he puts the stethoscope on his chest and belly and opens his mouth and lifts his shirt to show his belly) and not freak out. And the lab sticks are still going great! He fights a bit, but it's over quick and then it's sticker time!

Our appointments were spread out throughout the morning, but someone suggested we just go to ultrasound and ask if there was a cancellation because of the bad weather (we a three hour wait between appointments). Luckily, both ultrasound and urology fit us right in without much of a wait. Unfortunately, the ultrasound didn't go as well as the labs and Stephen freaked the whole time even with him laying on Daddy's chest and watching Sprout. Something about making him lie down gets him so freaked. But she was able to get some decent pictures of his kidney and bladder and Dr. canning, the urologist was able to tell us that Stephen's bladder is holding 12 cc's now; up from 5 cc's pre-transplant.  It's still super tiny, but it's growing and hopefully within a year he'll be able to hold it long enough that maybe we can start potty training. It will take some time, but it's a step in the right direction.

We also scheduled Stephen's stint removal with Dr. Canning for Friday, June 28th. Originally, we were going to wait until then to remove the staples, but Dr. Canning suggested maybe we attempt to remove me over the next few weeks while we're still in Philly and coming to CHOP on a regular basis. So the resident doctor came in and removed 1/3 of the 31 staples. Stephen of course didn't like it, but they came out very easily. If you've never had staples (I haven't) they actually use these little metal pliers to pull them out. They actually sent them home with me because we're going to go back on Tuesday morning and remove another 1/3 of them. I'm glad they removed them because leaving them in this long would have left little railroad track scars all the way down his incision for sure. The ones at the bottom especially need to come out because they don't get much air. And I think he'll be a bit more comfortable without them too.

After we finished up at CHOP, we raced back to the apartment, packed up some things, and headed out to beat the storm and get home to Virginia for the weekend. We're so excited to be home and I can't tell you how great it is to be sitting at my kitchen table writing this blog post, eating some lunch, and feeling a sense of normalcy. I've been sifting through all the weeks of mail and catalogs and I can't tell you how much I've been able to get done just this morning so far! It feels to have mundane things to do like laundry and bills and cleaning. And Stephen loved playing in his playroom this morning! I was in the kitchen this morning cleaning up and realized things were way to quiet in the house so I went to find him. He was playing with some of his cars, talking to himself and happier than a clam while the dog looked on. It was so awesome to see! And I pulled out his little train table this morning that he hasn't played with in months and we found some match box cars in it. He went crazy! It was so great! Now he's just snoozing away up in his cool, dark room. And he slept great last night at home!

Such was not the case the other afternoon when I checked the monitor and found him undressing himself instead of napping. He had his shirt pulled up over his head Beavis and Butthead style. It was hilarious albeit annoying that he wouldn't go to sleep!

Monday, June 10, 2013

One Month Kidney-Anniversary

Yesterday marked one month since Stephen's transplant. Luckily, we got to spend the day with family celebrating my Dad's (Poppy) birthday in York, PA instead of being cooped up in our Philadelphia apartment (we're really feeling the 800 square feet today after being trapped instead all day because of the rain). And on Saturday we finally got to see Uncle Dick and Aunt LuAnn after months and months of trying to coordinate a visit when Stephen wasn't sick. Those of you who read the blog a lot will recognize that name; Aunt LuAnn is a faithful commenter!! Thankfully, Stephen was on his best behavior and was lots of fun on Saturday. Our biggest challenge right now is curbing his "roid rage" caused partly by the steroids he's on and partly (I think) by the Terrible 2's. They are in full effect!

In other kidney news, things are still looking really good. The biggest challenge for th doctors right now is getting Stephen's white blood cell count up. It was really low last week, so they changed up some of medications by eliminating one that causes a decrease in white blood cell count (an antibiotic) and adding two others to replace it. Today, his white blood cell came up a good bit, but his Prograf levels were back up a bit, his creatinine was up by 0.1, and his EBV levels were slightly elevated. Nothing to be concerned about yet, but they're going to tweak some things and decease his Prograf again and hopefully by Thursday things will even out again. We are planning on moving back home to Virginia next Saturday, so I really want things to get straightened out before we go home and our visits decrease to once a week.

The plan right is to move home on the 22nd, but then come back for visits one time a week. Most likely, we'll drive up on Sunday nights, stay at the Gift of Life House and have our clinic visit Monday morning. Then hopefully we'll be out of there right around nap time and Stephen will sleep the whole way home. At least that's the plan for now. But we'll be heading home to Virginia again this weekend to celebrate the nuptials of our friends Jamie and Erik. Can't wait to relax and let loose for an evening!! And maybe, just maybe, sleep in a bit since Stephen will be at Nana and Poppa's house! Woo hoo!!!!

Also just wanted to let you all know that Kristin is also doing really great. She told me she a bit fatigued by the end of the day, but otherwise is feeling great. Thank The Lord!! She has her 6 week follow-up appointment coming up and I'm crossing all 10 fingers and toes that she's given a clean bill of health. It's just such a miracle that she's part of our life and that everything has gone so amazingly well for her and Stephen. It really is so crazy to think about what they both have gone through and how far they've come in a few short weeks!

Well someone just finished their dinner (evening tube feed) and is asking to play with his duckies in the tub. So I'm off to get soaked by a two year old crazy boy and love it!! But wanted to share this awesome collage of photos with everyone. My friend Heather had organized a "flash love mob" on the day of Stephen's transplant. Friends and family sent us pictures of Stephen and Kristin's names written on their hands to show their love and support. It was so awesome!! And I made sure to keep them all so we could remember that feeling and share it wi Stephen one day. This will definitely be going up somewhere special in our house when we get home!

Sunday, June 2, 2013

Headed Back to Philly

In the car on our way back to Philly after a great weekend at home. We did have a little bit of a scare and came close to going to the ER on Saturday, but thankfully didn't end up needing to go in the end. When I gave Stephen a bath on Friday night I noticed his diaper had collected pinkish looking urine. After ripping it apart, I realized he had been peeing bloody urine and his diaper Saturday morning had much of the same. So I paged the nephrologist at CHOP and at first she wanted us to go to the ER for a urine culture. But after speaking with both the urologist and transplant surgeon, they all figured it was probably the stint causing some irritation and we could deal with it next week when we got back. And then by Saturday evening, his urine cleared up. So I'm really glad we didn't go through the whole mess of going to our ER!

Despite that scare, we had fun hanging out at home and playing with all "new" toys. We have appointments again on Monday and Thursday and then we'll see if we come home again and maybe take a day trip to the shore or somewhere else. We'll just wait and see what the week brings. But we'll definitely miss Mabel! These two had fun playing this weekend for sure!