I want to apologize in advanced for a another picture less quickie. Hopefully, I can make this short but sweet!
After I posted yesterday things took yet another change. Daylon had several more seizures with the longest (and thankfully the last one) lasting over an hour. They think that the extra blood has made is body's tolerance very low. It all started during dialysis and dialysis has been diluting his sedatives really quickly. So much so, that he's awake by the end. The sudden drop has become too much for him now. He had another CT and it showed although the bleeding had increased, it was very minimal. The Neurologist told me that we are going to continue down the same path but he doesn't think Daylon is strong enough to undergo surgery (that was hard to hear) and all the additional risk, just don't make it a possible option. He is topping out doses on the only 4 sedatives he can have (having a failing liver and kidneys seriously minimizes the meds they can give you we are learning). After the last seizure ended (around midnight last night), Daylon started jerking. It was really weird. None of the doctors have a clue what is going on but it's kind of like his stomach and chest are bucking. An EB kid bucking for hours is a recipe for disaster. Nothing thing they gave him would calm him down. His G-tube has started to bleed from all the movement and the blood is all over his skin and falling into his stomach. Or at least we hope it's falling into his stomach because his stomach is now bleeding. I feel pretty confident that it's just the movement. His temp. was up to 105F at one point last night and then it just dropped to 97F. Weird. Again, they can't pinpoint why. The BMT attending thinks it could be the blood sitting on his brain...I like that theory. He can't afford to get a blood infection now. So far all the blood cultures are coming back negative for infection so that's a relief! Yay! His Bilirubin (liver) and Creatinine (kidneys) levels are both up, but it's kind of expected since they took him off the difributide and lowered dialysis.
We are in this so deep right now that I can hardly see the light. If I'm being completely honest with you, I am more scared now than I've ever been for his life. This is completely overwhelming. This is WAY MORE difficult than I could have imagined! I've cried now in front of 2 doctors in the last 12 hours. My chest is heavy, I feel sick and I've been mid-prayer for 48 hours now... and it's not even a good prayer, it's more like a beg.
Thankfully, I have three bits of news that have pulled me through the day!
One: After I came home last night to grab a quick shower and a meltdown, Brian and I decided to ask my mom if she'll come back up to help us. I called this morning and she's coming in tomorrow night at 8pm! Woo-hoo! Help is on the way! We're just being spread way too thin and something's gotta give before we break. I'm sooo happy to have some stress relief! It is kind of embarrassing though that my aunts just left on Weds. and we already are calling!Oh, well! Don't judge us! :)
Two: We made the decision that Brian and the kids are not going to come home Aug. 7th. Keira will go to school at the RMH and Brian's job will still be held at Interact Power. I love that we don't have to be separated for such a very long time! Plus, I'll be able to see Keira off to her first day of Kindergarten (my dream!)!
Three: The BMT doctor made it clear that he can turn around from here and if he didn't think it were possible, "we would be having a whole other talk". I really like Dr. Verneris. He knows his stuff , stays on top of Daylon's condition and it's so nice to have a doctor on the team that cares about him and sees him as "Daylon" and not "BMT EB patient 11, 12 month old with Junctional EB".