Day +32: Moving forward

Erik Hendrickson (I used to babysit him!) is serving his mission out here and stopped by for a visit! It was so sweet! He's so grown up now!
Today was better!! Daylon hasn't seized since late Sat. night, his "soft spot" is flat and his eyes are focused. All good signs pointing in no increase in size of his brain hemorrhage. On to level two of the danger zone! Yay! This is such a HUGE sigh of relief! I can't even tell you how excited I am. I had faith he would make it through (although I had to keep reminding myself of every spiritual confirmation I've had that we should be here), but now I have hope. These are two very different things and I'm learning that more and more. I'm smiling today. I like being happy. I know he's still "very critical and can turn at any moment", as the doctors put it, but I've been able to be self indulgent with my time today and do things like visit the ladies room, and come back without finding out something horrific has happened. His bilirubin and creatinine levels are down today, which is really surprising, but we'll take it! His weight is down to 13.8 (it was the same yesterday), so that's a good sign that his VOD, and therefore his kidneys are getting better. Dr. Wagner informed me that the body won't let the weight off if they weren't improving. Woo-hoo! The bleeding from his g-tube site has stopped and there isn't much blood in his stomach now either. They may even start up his feeds again...although he will be back to TPN (IV nutrition). His temp. is still all over the place. He would be 93F for an hour and we'd have to cover him up and then it would jump to 101F and hurry and uncover him. This is so weird. Both Dr. Tolar and Dr. Wagner have been coming into visit him and the only thing they think it could possibly be is the blood sitting too close to a spot on the brain that controls your body's temp. The attending Dr.s switched today, which meant a morning of trying to convince the new doc. that all the sedatives Daylon was on were needed. It was a rough battle, but we won. He's on enough sedatives to knock a large adult into a coma, but he's up and jerking within 30 mins. of dialysis. The problem is of course, wounds and infection, but pulling the meds off so quickly can trigger a seizure. Plus, once they loose the sedative on Daylon, it's gone for hours. It takes them soooo long to get him under control! Once he woke up this morning, and saw him in action, they joined our side with little persuasion. :)
When Dr. Wagner came in he told me that he would have never dreamed it would be this bad. Daylon is his first patient (not just EB) to ever have a brain hemorrhage. He said he designed the EB BMT chemo to fit an infant and the Busulfan (chemo drug) has caused both Daylon and Bella to get VOD (which inturn causes almost every other problem he has), so he thinks he may have to reevaluate the dosing. It's nice to know that in a way, they're helping other infants coming through. He's never had an EB patient on defibrotide (b/c no others had VOD) so he's not sure if the hemorrhage is more likely with EB or not. I think it's a fluke.
So, the long and the short of it is, Daylon is about the same as yesterday. He's not any worse and I like that. I'm trying to think of this stuff as a bump in the road. The road is a bit bumpy, but the road is still there and he's walkin it. Thank you for all of your prayers on Daylon's and our family's behalf. Not only have the complications stopped piling up, but Brian and I feel comfort and a sense of peace that we've desperately needed. All of your comments were so touching to us...they made me cry!...good tears, though! Thank you, again! In the words of Dr. Sumani, the PICU attending, "God is good and we'll take this one day at a time".