Friday, May 17, 2013

He's Back!

I feel like a broken record, but our little boy is back! He turned things around last night at 10:00 PM, when he woke up from a long nap through yesterday late afternoon and evening. It started with him asking for ice and then he wanted to play with his Thomas flashlight and then he allowed the nurse to hangout out with him and gave out some fist bumps and high fives. He woke up a few times throughout the night, but pretty much slept right on through until 7 am this morning. I actually found him sleeping sideways in the hospital crib this morning around 5ish. Unfortunately, I was still asleep when the new nurse started this morning and the first round of doctors came in, so I wasn't able to run interference right away between them and Stephen and he got a bit agitated this morning. But today he was able to get it under control and I made it very clear to everyone that he needed his space and not to crowd over him. I think a lot of what was going on yesterday was sheer anxiety and being scared that people were going to mess with him every time someone came in the room. It's funny, it's like when you tell people that your dog doesn't like people and he might bite, but they think "I'm good with dogs" and still try to pet the dog. That's what was happening this morning! Just leave my kid alone until he's feeling better! I'm not kidding when I when I say he's scared! But the cocktail of adavan, Tylenol, oxycodone, nubain, and ditropan (a balder relaxer) is definitely working. The pain team wanted to start weening him off the pain meds today, but his pain has only been under control for less than 24 hours, so we put the stops on that. He needs a full day to rest, relax, and recover.

Stephen did get a good morning nap and then had some special visitors and was able to get out of bed for the first time. Kristin, Stephen's amazing donor and her husband Matt, came by for a visit before they left Philadelphia. Kirstin is going to DC to spend a few days recovering at her brother's house before she comes back to Philly for her two week follow-up appointment and then finally be able to go home. It was great seeing them again and it was perfect timing that they were here when physical therapy came for the first time and got Stephen up and out of bed. He's obviously been out of bed in our laps before, but he made it the whole way to the couch today and she tried getting him on his feet for a little bit! Stephen actually ended up having a blast sitting and playing with some cool new toys, including a pair of super cool orange Flyer sunglasses!

After they left, someone was pretty sleepy, so he got back into bed and is now snoozing. But that's not all that happened today: Stephen is also starting back in his home feeding regime of bolus feeds during the day (which is a big deal) and the Head of Urology came a little while ago and unhooked Stephen's Foley catheter from the drain bag and is letting it drain right into his diaper! That's an enormous deal!! Because Stephen has never used his bladder, it's the size of a pea. So he needed a catheter that would drain all the urine directly out of the bladder as to not put any pressure on the stitches between the bladder and the kidney (the ureter actually). The surgeon originally told us that Stephen would have this catheter for close to 6 weeks and that it would need to drain into a bag and he'd have to carry this around everywhere he went which I knew would be a huge challenge with a 2 year old. But the Chief Urologist made the call that the bag and drain tube was actually a source of infection and it would be much better to just drain into the diaper. We practically jumped for joy when he unhooked that thing. It was a huge pain in the butt and actually really gross. The urologist, who knows our urologist in DC, is going to work on a plan with us, see us while we're here in Philly, and coordinate with the doctors back home on a plan for stretching Stephen's bladder. There was a whole lot of high-diving between the three of us when he walked out the door!

So now the only thing Stephen has tying him to his hospital bed is the maintenance saline flush keeping his accessed port open for blood draws and IV pain meds. And now that the catheter is draining straight into his diaper, I'm getting ready to start changing lots and lots of wet diapers! Yippee!!


  1. Hi Lindsey,
    So happy to hear that Stephen is having a better day. He looks wonderful! Just seeing him out of bed enjoying himself is amazing. Glad we can finally put a face to Kristin's name--The picture of our "two miracle" will forever remain in our hearts. Get ready for those wet diapers Mommy--Superman is going to pee up a storm:)

    Love and Prayers,
    Aunt LuAnn & Uncle Dick

  2. And then God said: PEE!


  3. Wow- It has been a long 10 days for all of you. Here's wishing that with in the next 10 days you all get to go outside and "smell the roses". You are our heros.

  4. Any updates since Friday? Does anyone know how they are doing?

  5. It's the little things! You'll be changing wet diapers soon!!!! How cool is that?!
    Stephen looks absolutely wonderful. We continue to pray for healing and good progress, especially as you manage these transitions. Won't it be wonderful for you all to be home and get a good night's sleep soon?

    What a beautiful woman Kristin is! So wonderful to see both patients looking so well.
    Hugs to all of you,
    Kathy R. and boys