Danny's newest Hardware.....the VEPTR2 rib to pelvis connection.
His torso is SOOOOOOO long now and not to mention VERY straight!
Monkey'n around...his new balloon
Just as last nite went....this morning continues to go well.Danny has had some bumps in the road but nothing too serious. Last night he really wanted to not breathe deeply so his CO2 levels and other labs jumped significantly, BUT when he heard that they were bringing in a vent to "help" him out some....Danny decided he'd rather start breathing better then be put on the vent. Sassy BOY! This morning his labs were all coming back down into the normal range :) This morning's issue is his lack of bowel sounds and pee. He was given lasix very early this morning which helped BUT he seems to slowly decrease his output once again. I believe if it continues they are going to try albumin to see if that helps out. We also gave him a suppository to see if that helps in the pooping dept.
Ok NOW on to the good news!
Did I say how GREAT he looks!!!!!
It's amazing how straight he looks, I didn't think it would have been so noticeable. Now I can't wait to see what he looks like sitting in his chair, BUT I'm alil on edge as I know it's going to be very uncomfortable for him. One step closer to being home so let's see what he can do...You'll NEVER know what he can do, unless you let him try. PT is coming this afternoon and they are going to attempt to get him in his chair.
He is tolerating the pain VERY well, much better then I had anticipated him too. They just turned off the IV drip pain med and started on the oral meds so we'll see how he does with that this afternoon....again another step closer to home :)
The incisions are ....well, a cake walk to what I had thought it was going to be. The surgeon didn't open him up like I had thought with one BIG incision. Danny has a small incision by his shoulder blades and above his pelvis on both sides and then they threaded the rods under the skin. So other then him probably feeling like he got hit by a Mack truck the incision site should be a BIG issue for the pain source.
The Neurosurgeon was able to thread in Danny's ITB catheter back up to T1, WOW. I'm so excited as they have already started to turn down his pump rate and they are thinking of getting rid of some other tone meds. Now to sit and wait to see if his leg functions come back :) EXCITING!!
All in all this decision has seemed to be the right one for Danny. I'm sure it's not going to be all roses through his road to recovery, but I DO BELIEVE in the end It will improve his quality of life. That's what IT IS ALL ABOUT!
Thanks again for following us and sending your support our direction. I will keep you posted on his progress.
Danny and I are in Room#416 surgical ICU at Children's of Wisconsin in Milwaukee the direct line into the room is (414)337-8106. Thanks for thinking of my Lil Man :)
Avrianna is doing wonderful at Girl Scout Camp. I don't even think she misses us! I'm glad she has something to do to occupy her time and mind. Can't wait to see the fun stuff she did at camp :)
Now I'm off the start Lil man's scrapbook. My project for this admit is to start in finish it. Avrianna's is already complete!