Today was emotionally draining and I'm ready for tomorrow. 7am this morning Daylon was screaming and blood was rolling down the side of his tummy while I changed his dressing. Brian couldn't even look at his belly and I was done. It was one of those moments where you either have to start bawling or start yelling, but some emotion is going to bust down your door? It was that moment. I called thw hospital, asked for the Pediatric Surgeon on call, and then told him (without losing it, I might add) that he WILL fix this giant hole TODAY. Yesterday he was in this guys office at 10am (yeah, no date hour :( )and they said he'll have surgery at some point next week. Today he told us to take him to the ER and he would look him over. Long story short:he didn't look at his bare skin, he refused to do the surgery this weekend (b/c the proper EB trained OR staff isn't all on) and he said he would try to squeeze him in sometime during the week. Oh! He also said that if I wasn't able to change the dressing for his whole stomach,then he could be admitted so the nurses could do it. :/ It was like he didn't get that this kid was covered from the neck down constantly until 2 or so months ago! Sorry. Guess I'm still mad. Anyway, I said that he needed to help him on Monday for sure then and he said he would try to fit him into his schedule Mon or Tues.if he were admitted,but he can't promise anything. I took the offer and emailed Dr. Tolar on the spot. I PRAY that he comes through for us and tries to throw his weight around to get it done asap. It's nice to see everyone on 5D. They're so wonderful. Everyone showers Daylon with attention and they're fuming right along with me. :)
Daylon had dialysis today also. I was lectured for most of it by 6 different dialysis staff about how he shouldn't be on IV drugs and how I'm ruining his line by meds through it. They poured on the annoyance like there's no tomorrow. I wanted to just say, "Are you joking? You're mad at me for giving him his meds?!" They refused to allow me to give him his CSA because "he can miss it" and his Keppra (seizure med)because "it can wait". I've been like a volcano all day and I think you all are paying for it with my vent. Sorry.
Anyway, Daylon is now also running a fever of 103.7 and his belly is so raw and eaten in parts that what looks to be his fat is starting to poke through in the areas where the most skin has melted away. Also found out that his bile PH level is one...so, pretty much pure acid.
The surgery will take about two hours and Daylon will be intubated and paralyzed for it. Please pray that everything will go well in surgery that he will be extubated immediately afterwards. I put on the "Pandora" website so Daylon can go to sleep. The songs haunt me. They're the same 20 or so songs that played for Daylon when I had it on when he was in the PICU. So many horrible memories are flooding my mind as I type. I think it's partly to blame for my fear and hysteria in this post. That and today while I was changing Daylon's dressings Caleb said:
Caleb-I'm gonna be sad when Sadie's and Violet's birthday comes (Dec. 3rd)
Caleb-because that's when Christmas is coming and Daylon's going to die and we're going to go home.
We told him that Daylon would be fine and he was coming home with us. I know he's probably just confused because unfortunately,two of his closest friends here had their EB baby die and then they leave us and go back to California. He knows we're going home right before Christmas, so I think it's how he sees all this. I'm sad that my kids have had to experience so much pain in their short lives, with so many grown up thoughts and concerns. His words have weighed on me all day.
He has this surgery and then his brain surgery that I'm nervous about. His stomach is more than likely infected as well, which will be another challenge for him.
Thank you all for helping to carry us through our trials in prayers and friendship. It means the world to us.
Thank you to all of you who attended the blood drive today...whether it was in California or New York or somewhere in between, thank you. Sweet dreams.