Weekend in Pictures

All three of us are recovering from colds and the sniffles, but we managed to have a great weekend either doing nothing but watching TV or enjoying the Bluemont Fair in Bluemont, VA. And best of all, Stephen had his last home infusion of IV antibiotics on Saturday morning and then a nurse came to the house and pulled out his PICC line. We were shocked to see how long the line was (it went the whole way from his upper left arm to his heart!), but Stephen barely flinched when he pulled it out. Glad to have that behind us and hopefully will never have to do it again. Tomorrow, we have a visit to the transplant clinic at CHOP to catch them up on everything that's happened in the past two weeks and hopefully have good lab work.

HOME!!!

WE ARE HOME!!!!

More details to come about the plan for home infusion antibiotics, more doctor appointments and all that happened the past couple of days. Right now it's time to unpack, unwind, and play :)

Out of Surgery

Stephen is out of surgery and snoozing in recovery. His procedure went well to remove the port and the PICC line was placed in his upper left arm and working great! Per the usual, he handled it all like a champ! 

Surgery Tomorrow

Sorry should have posted earlier but the day got away from us! Stephen's surgery to remove his port and put in a PICC line is tomorrow at 8 am. It should be a short and simple procedure but it's always nerve wracking taking your baby into the OR and I never look forward to leaving him in someone else's hands. Although I feel super confident that Dr. Kim, the surgeon, will do everything perfectly! He's never let us down before!

Hospital Life

Here's an overview of a day in the life of a little boy stuck inside a hospital:

Zooming cars and trucks where ever he can

Watching cranes and construction workers (aka Bob the Builder) build a new tower at the hospital 

Getting to spend a little time outside

Greeting everyone in the hallway

And finally feeling better!

Update

Update: had a good night overnight thankfully since Stephen didn't sleep at all Saturday night. The bug in his blood has been identified as clubsiella and the doctors think it migrated from his GI tract into his blood. But still waiting on infectious disease to weigh in. Today they are doing a GI, liver and kidney ultrasound just to check everything out and Wednesday he'll have surgery to remove his port and put a PICC line in. The PICC line will allow us to administer IV antibiotics at home and finish out the course at home. Not fun to go home with extra "parts," but if it gets us home quicker, I'm all for it! 

Staying For Awhile

Unfortunately, we weren't lucky enough for this to be a viral infection. Stephen actually has a blood infection; a first for him. The infection is thought to have been caused by a GI or urinary bug and not from his port (central line). Final cultures are still pending so we don't have all the details, but we will definitely be hunkering down here in the hospital for awhile until this is under control. And most likely removing his port to eliminate it as a source of infection. Just hoping my little guy starts feeling better soon! Poor thing is so miserable 😷

Sickie

Stephen was admitted to the hospital last night 😢 30 minutes after I had put him to bed, he started throwing up and spiked a 103.7 fever. Which was shocking because he was running around and playing like crazy just prior to bedtime. We ended up bringing him to INOVA Fairfax instead of making the 2.5 hour trek to CHOP because he just seemed too sick. They are running all sorts of tests and giving him preventative IV antibiotics, but we are hoping he just picked up a virus somewhere. The worst part about it was he didn't get admitted until 4am (we arrived at the ER at 11:45 pm) so we're all a bit tired and cranky. But hoping to be home ASAP (probably tomorrow)!

Poor Stephen just doesn't know yet that Elmo and Thomas will be replaced shortly with college football 🏈😀

Vacation

Our trip to the beach was so awesome!! We spent almost 10 days at Nonnie and Pappa Schwartz's house in Southport, NC and did so many fun things! We talk all the time about how awesome life after transplant is, but it was so evident during our trip. We left for NC whenever we wanted, we went to the beach at night for dinner and stayed as late as we wanted, went to the beach and pool everyday without a worry about infections, and we were able to leave Stephen with his grandparents for two nights so we could to Columbia, SC with Matt and Kristin (Stephen's kidney donor) to kick-off college football season. And even better.....we didn't have to do lab work while we were away or worry about Stephen needing medical care. But honestly, the best part was being able to spend the evening at the beach and not even think about dialysis. It was so awesome!! And watching Stephen play and run and discover new things was way cool!!

We took so many pictures and I'd love to share them all, but I think I might crash a server someone if I try to upload them all (and videos too!). But I'll try to pick some favorites and remember that I post Stephen's videos to YouTube. Just search for "lschwartz531" and you'll find them all.  You'll find a really great one of him running on the beach and hitting a baseball.  While in NC, we also discovered out little guy has an awesome baseball and golf swing and he hits left-handed! I think he's got his Daddy's jeans!

Heading off to do some putting

Tish and Steve (Nonnie and Papa) took Stephen on the ferry to Ft.Fisher to the aquarium while we were in South Carolina. Stephen LOVED it!

Bill and I at the University of South Carolina vs. UNC football game with Matt and Kristin. Kristin is Stephen's kidney donor. Bill and Matt were roommates at USC, but Matt is a die hard UNC fan. We had a blast despite the brutal heat (it was 140 degrees in the field at game time at 6pm!).

Our last two nights in NC were spent on the beach watching the sunset while having a picnic. 

And then it was back to reality. Bye bye Southport! Until next time....