Transplant Day 3

I apologize there was not a day two post. As you all can imagine it can get pretty crazy here in the PICU. Over the past two days Dylan struggled with his breathing tube. He hated not being able to communicate with us and actually started biting on it. They were concerned that he may actually close his airway this way. After many attemps to keep his blood pressure at a certain level we lowered and discontinued Dylan's heart meds and finally got to get the breathing tube out. What a great moment. It was wonderful. My baby could talk again and he was much happier. Dylan's pressures have remained normal and in the target range they want. We have also been able to remove two of his many lines. There is talk of maybe...just maybe clear fluids in Dylan's future tomorrow. He has recently started saying he was hungry and thirsty so this would please him for sure. Dylan's pain is managed pretty well. They have him on a small dose drip of dilaudid with a pain button. So far so good. Noah on the other hand is having A LOT of pain. I feel like he just can't get a break. They had switched him from dilaudid to fentanyl and it was working for a little bit. Last night I checked on him and he was burning up and his stomach was rock hard and tender. I felt terrible I couldn't be there more for him. It is so hard because I would love to be in two places at one time. I feel like he must feel neglected. Today Noah lost his iv's due to infiltration and after multiple tries to start another iv an air flight nurse finally got a line. This irritated me beyond belief and I felt helpless. A doctor finally came in to see Noah tonight. They have given him a sleep aid so he can get some rest. He has not been able to rest at all. 

There was a highlight of the day...Noah got to come see Dylan. It brought tears to my eyes. What a magical moment. The look on Noah's face will forever be etched in my brain. I am hoping Noah feels good enough to come down again to see him. I think it will help them both to recover. 

I want to thank all of my amazing family and friends. The past two days would have been far worse alone. So thank you. I will try to update as we go. Please continue to pray for my boys.

-Amber