Day +62

    Today is actually Day +63, but it's just begun, so I'll catch you up on yesterday. Yesterday was a pretty good day for Daylon. First off, Dr. Tolar came in and told us that he's been working on Daylon's Day +60 labs and he had the results! Daylon is 100% engrafted within his blood, as opposed to Day +28 results of 100% and 91% (two different types) which was still considered a success, but obviously, 100% is better. He also said that his T cells (immune fighting cells) level was at 397. A healthy, person without transplant has a level of about 400. He said that quote, "across the board, I don't see this type of level until one year post transplant." What great news! We're all feel so encouraged by such a high count. It was kind of funny, actually, because Dr. Tolar said that Caleb must be a pretty incredible little boy and that it's almost like he has cells with super powers. I laughed and said, "Yeah, like a X-man." His face lit up and he shot back, "Exactly!" :)
   Yesterday morning Daylon had both physical and occupational therapy and things went well. He was more alert yesterday (spoiler alert: and today) than he has been. He's turning his neck now to tract objects and is consistently responding to his name. Perfect timing because I was beginning to wonder if how he's been is a permanent state. It's so funny, how you're not given more in your trials than you can handle. Every time I start to feel I'm getting to my breaking point, I see a glimmer of something new, an improvement. Once that happens, it's like the world opens up and I can breathe easy again. How can I not smile when I'm reminded that God is ever present in our lives.  I know He's watching over us, and is aware of our needs.
   As for dialysis today, well, things are still a bit confusing. Daylon's blood pressures have gone from low to high. He's actually hypertensive now for even an adult.  The good news is that he didn't need any dopamine to keep his blood pressures up! :) Daylon had his lines ethanol locked for several hours in the middle of the night, to help clear the line of any bacteria. I am happy to report that his fever went only to 101F! Yay! He still was splotchy and acted a sick, but he slept a lot and fussed very little. :) Last night when they tried to lock his lines, I don't know if the nurse pushed it through to fast or what but his face turned all red and he started choking. Anyway, she freaked out and pulled it out. The nurses decided that they would wait until tomorrow to lock his lines when more doctors are around. I don't think it's a big deal, to be honest. I hope he doesn't run a fever today.

Daylon after dialysis

Woo! Look at all that skin! :)

  
     Yesterday was also the big bandage change!! I was so nervous not to put on as many bandages. Thankfully, Dr. Tolar came in in the middle of it and gave me the pep talk I needed to get it done. His feet are a complete disaster, but the rest of him looks amazing! It was actually the first bandage change I've done by myself in months. Well, I take that back. The nurse did take a picture of his back while I held him up and I paged her twice to hold his bandages in place on his legs while I put the tubifast over it. Anyway, it's a huge milestone for him! He is normal a CRAZY man during bath time. He fights us so much  that he ends up tearing up his skin and bleeding, and we're worse off from when we started.  High five, Little Man!

                               normally we go up to the top of his thigh 

normally all the way up

We have a new attending on today and just got our new fellow a couple days before, so I feel like we're back to square one in a way. At least I've got Dr. Wagner's and Dr. Tolar's email addresses. Oh well, overall, things are moving forward.
  While I've got you here, a bit of time has passed since I started so I'll fill you in on today real quick:
  Daylon had a good early morning. Alert again! Yay!
  Continued with high blood pressure and the Nephrologist is taking off more weight (WHAT?!) because he believes it's fluid related. He said the fontanel is not a good indicator of his fluid needs. He also says that it's really rare that people are allergic to dialysis, so he doesn't think that's what his problem is.  Also, he said that if he had an infection in his dialysis line, the cultures would show it. He said that his problems have nothing to do with dialysis. It's all just a coincidence... This guy is seriously erking me. It's like he thinks that if these problems are dialysis related than it's his fault. My gut tells me he's wrong. How can Daylon not get sick on the days he doesn't have dialysis and say that the two aren't related? I've felt it was the problem from the beginning. Dr. Tolar thought one cause was an infection, and treated it like one and it got better.
  Today he's also ghost white and throwing up. He's not strong enough to get it all out, so I have to stick the Red Robinson in to suction up the rest, which causes gaging, which causes, yep. And the cycle continues.
  Well, dialysis is ending. I need to go help get a bed weight. Hope all is going well in your corners of the world! Have a happy day!
PS- no new blisters so far! It's been almost 12 hours with fewer dressings!

pooped out from his dressing change!