Thursday, May 30, 2013

4 Weeks

Today marks exactly four weeks since Stephen's transplant surgery. It's pretty incredible to think about how much has changed and how much he (and the rest of us) went through in the past four weeks. It seemed like we were in the hospital FOREVER, but now that we're "home" time has been flying!

We had another transplant clinic this morning and everything went really well. We switched things up and instead of having the IV team come and access his port and go through the whole lengthy process of accessing him for one tube of blood, we gave the lab a shot and it worked out great! The whole reason Stephen has a central line is because none of the phlebotomists or nurses at Fairfax were able to find a vein to draw labs. Every week and some times more than once a week when he was a baby, I would take him to the lab where they would poke and poke him and then never find a good vein. So when he was 6 months old, they put the central line in. And we've been using it ever since. But it's a huge process and Stephen isn't very found of it and now that he's bigger and his veins aren't used, we thought we would give a needle stick a try. And it went great! The phlebotomist got it on one shot and Stephen actually handled it really well. Plus, we were able to time his labs perfectly with his meds so we got pretty much an exact 12-hour draw from when he had his last dose of Prograf.

I also had to get a urine sample from him this morning which was a bit challenging (had to tape a little plastic bag around his boy parts), but we eventually got it and their checking to make sure he doesn't have a UTI or other urinary infection. His original culture grew some nasty bugs and he's been grunting a but when he pees, so we'll have to wait and see what this culture grows.

But other than that, he's doing really great! He's eating more and more everyday and drinking water and juice and all around just getting back to a normal routine. He's now really trying different foods and so far he's been eating goldfish, cheese-its, crackers, Oreos, ice cream, bread, pretzels and of course ice. But he's been putting other things in his mouth to try which is a huge step! We've been spending as much time outside as we can sine we're not allowed to be in indoor places like restaurants, malls, and museums and so far we've seen some really cool parks in and around Philadelphia; parks that also have choo choo trains and we've had a couple of picnics too.

Bill actually went back to Virginia on Tuesday afternoon and depending on how his blood work comes back this afternoon, we might actually drive back home to Virginia for the weekend. Stephen is definitely excited to see dog dog (aka Mabel), I'm dying to get him a haircut, and Bill and I will celebrate our 5 year wedding anniversary tomorrow. A definite accomplishment! And maybe, just maybe, we'll get a little pool time in this weekend sans the annoying dialysis catheter!! Oh and speaking of dialysis; I tried to get Baxter to come pick up Stephen's dialysis machine since we obviously don't need it anymore, but they won't do it without permission from our dialysis nurse. Finally we can get rid if the big, heavy machine, but I can't get anyone to take it! I just hope we're not (well, insurance and Medicare) aren't being charged for something we don't need. That's probably wishful thinking!

Well anyway, I can talk and talk about all the changes over the past 4 weeks, but I think pictures do much better justice. So here's where we started from on May 9th and how far we've come to today. It's amazing!!


  1. Hi Lindsey,
    We've been waiting for a post but figured you probably had a clinic visit today and were waiting to give us a report. 'So happy to hear that everything is going great. It is amazing to see what Stephen has been through the past four weeks and how healthy he looks. He really is a miracle! Hope you get home for the weekend and HAPPY 5th ANNIVERSARY!!
    Uncle Dick and Aunt LuAnn

  2. I just got chills from reading all the recent posts; this is great news to hear of Stephen's progress. And his diet of cookies, pretzels and crackers sounds delicious. I hope you get back to VA this weekend. Happy anniversary to you and Bill :)

  3. Chills here too. So happy to see Stephen looking so well! Happy Anniversary to you also!
    the Raines


  5. love this miracle baby!!! Praise God for his progress!!!!