Wednesday, May 15, 2013

Hangin' In

My apologies for no update yesterday. I actually lost my iPad charger when we left the PICU, so I had to track down a new charger yesterday. Thankfully, UPenn's bookstore proved to be the perfect place to find that sort of thing so I'm back in business!

Right now we're pretty much tweaking lots of things in order to get out of the hospital. They're still working on pain management, getting Stephen on his home rejection meds, and starting his nutrition. Up until now, the only nutrition he's had since the surgery has been TPN (IV lipids) and pedialyte. The goal Is to obviously get him on formula at normal amounts and rates. But it's been a very delicate balance of ensuring his stomach can handle it without making him puke. He did ask for some apple juice and water this morning and has been eating ice chips and I believe they're going to start some formula at a really slow rate later this afternoon.

They've also been working at managing his pain better. Yesterday he was pretty good and they were ahead of the pain, but last night we were playing catch-up after a traumatic dressing and he needed some morphine to get him through the night. The IV team decided it would be good to change his neck (central) line dressing at 11:30 PM while Bill and I were out to get some dinner. He hated it and fought it and was so scared by the time we were allowed in the room, but the damage had been done and he had thrashed so much that he was in a lot of pain by the time they were done. And then every time a nurse came him he freaked out. This morning the pain management team put him on oxycodone plus the Tylenol and Nubain he was already on and that seems to be working pretty well. Once it kicked in this morning, he was like a new kid! But you can tell when he's ready for another dose, so hopefully he'll take a fairly good nap (it's so impossible to sleep in hospital with all the people and alarms), and he'll feel even better this afternoon.

And they're still tweaking things to get his bowels moving appropriately and hopefully we'll start some physical soon and get rid of some of the IV lines so he can get out of bed and also get a bath. So we're kind of in that slow-and -steady thing right now while they tweak him up and get all of his systems working. He has some really good moments where he asks for books or toys or to watch Elmo, and other moments he's just really pissed. And I don't blame him! I would be pretty pissed too with 31 staples in my belly!

We did though have a special visitor yesterday! Kristin and Matt came by to see Stephen and to check in on him. Kristin has been sore and is also working on managing her pain, but she looked wonderful! And she had a follow up appointment next door today at UPenn, so we're praying for a clean bill of health for as well! And most importantly, the kidney is still working perfectly! His creatinine is at 0.2 which is near perfect and the levels of all his rejection meds are great. So we can be extremely happy and grateful for that!

Bill took these two pics last night while we were getting ready for bed and reading some books and the other picture was after a little hair wash. Still no estimate on when we might be able to go home, but I'm thinking we'd be really lucky if got to go home before Saturday.


  1. He's got a little more color in his face and that sweet sly smile looks great! Prayers for you guys that this slow but steady piece will be without any downturns and will be as fast as possible. Great news, keep fighting SuperMan!

  2. both look great!

  3. Mommy and Stephen both looks great! His smile just melts our hearts. We will keep praying for daily improvement--slow and steady wins the race every time!!

    Hugs and Love,
    Aunt LuAnn & Uncle Dick

  4. He looks amazing! We will keep praying for Stephen and Kristen.

  5. Hi, I have been following Stephen's story for some time now. I cannot express also how happy I am that he has this smile on his face again. God Bless him Would you mind terribly if I write an article about Stephen's journey in my blog. He and Kristen represent hope for all those who are waiting in dialysis. Thank you. My blog is a new one and I have just started the organ donation awareness in India.