Day +36

Today has been the hardest day we've experienced yet on Daylon's BMT journey. The MRI went on as scheduled, and thankfully, without a hitch. In about an hour's time we were there and back up to his room, ready for dialysis. As they switched Daylon over from the portable monitors to the room monitors, we noticed his heart rate was running a bit lower than it has been. Once blood pressures started up again, the readings showed he had a higher pressure. We been watching for this since this weekend because it's a sign of increased pressure in his brain. The pressure on his brain, cause the brain stem to tell the heart to slow, thus causing increased blood pressure. Long story short, we were pulled into a conference room and told that Daylon's MRI showed not one, but two hemorrhages and brain damage. The damage is located near the motor skills and cognitive thinking section of the brain. They can not tell us how severe the damage will be. It could be movement issue which require physical therapy or mental retardation. It's any one's guess. They did bring to our attention that brain damage down to someone younger than three has been corrected by the brain finding alternate routes to send signals. There would be some permanent damage in that scenario, but it would be minor.
Due to the temperature being all over and his new heart rate and blood pressure issue, the think the brain stem may be involved as well. His brain stem can tell his heart to stop at anytime. After one months time, they believe that risk will end. Dr. Wagner is stumped. Dr. Cooy (PICU attending) is stumped. Neither one of them have ever seen something like this and have no clue what to make of it. Dr. Wagner thinks it may be a Junctional EB thing. I'm not sure if he thinks it's Herlitz or not, he never specified. The problem is, according to Dr. Wagner, Junctional EB is a mystery because no one has been patient enough to give these kids a chance. Dr. Wagner wanted to have Brian and I agree to a partial DNR (Do Not Resuscitate order). If his heart were to fail, chest compressions would rip his skin off his chest. Not to mention, if the brain was that far gone, there's nothing they could do anyway. We agreed, of course. We want what's best for our baby. The neurologist will be in tomorrow to answer more brain related questions.
I'd be lying if I said I wasn't heart broken by the news. We came here to save our baby from death and to try to offer him a normal life. The idea of him dying is devastating, but so is the idea of our little boy living with EB (for the next several years) and now being mentally or physically disabled. The idea that I may never hear his dinosaur growl or watch him blow me a kiss, is heart wrenching. I can barely stand it. How do we take on this next big obstacle? As I wrote the question, the answer popped in my head: "Faith". I've been thinking this all afternoon. Brian and I lingered in the conference room and said a prayer together. It was a comforting prayer. I know we were meant to come here. We both felt that this was where Heavenly Father wanted us to be. Once we made the decision, all of our ducks lined up in a row. Daylon got stronger, his cells were fixing themselves. Life has been known to throw us all through the loop. It's so important right now, that we have faith in the impossible. There is a reason for all things, and sometimes you have to dig to find them, but they're there. I had a talk with my mom today who reminded Brian and I that they were told my sister Emily would be severely mentally retarded and as I write this, she's away at school getting her Master's degree. Tim (Bella's daddy) and I talked today and he encouraged me to remember that no doctor alive, can tell us what will happen with Daylon's brain. The brain is a pretty incredible mystery. My dad told me that "everything will work itself out" and to stay optimistic. I sure am trying. I can't wait until I can hold him again. My arms ache to rock my little baby, so bad that it literally hurts. I know that wonderful things are in store for Daylon. This is so much for such a young person, or any person to go through. I think very special, strong spirits are given such challenging obstacles to overcome and so many blessing to be received by them and everyone around them. It's an honor to be a mother of such a spirit.
Thank you all for caring so much about Daylon. We ask you all to please pray for a full recovery for Daylon. Prayers are all we got. We love you.