Day +4: so much to take in

Daylon had a late night last night, falling asleep at around 3 a.m. He was breathing well with the oxygen he was receiving with his saturation levels in the high 90's (remember 100 is perfect, anything below 90 and they up their game). At 6:30a.m. Erin (our primary nurse), woke me up to change his diaper. Erin stood by his bed holding the mask to his mouth as I changed him. Daylon was agitated and his oxygen saturation level was in the low 90's and upper 80's. The charge nurse joined us in trying to make him comfortable. They messed with how much oxygen he was receiving, we sat him up, he was suctioned (which is just painful to watch, more or less endure I'm sure), I cupped his back (a trick I learned when Sadie has RSV last year), we rolled him onto his back to try to let all the secretions drain forward. It worked for a few minutes but eventually his levels fell again and his g-tube site and chest started to bleed, so we rolled him back. Some more nurses came (the shift was going to change) and the docs. came in. They decided to get another ICU consult and left to speak with the other doctors. By this time his levels were in the 80's and nothing was working to bring them back up. Erin, Rachel (the daytime nurse that was coming on) and I fussed over him. As the levels dropped he was no longer responsive and became limp. I watched his face become blue and then gray. I kept calling his name but he wouldn't respond. He wouldn't breathe. The nurse pushed the code blue button and two dozen people rushed the room, pushing me aside. He was bagged and EB or not, suctioned deeper, his clothes were cut off, and the sea of people grew deeper. I just stood in the corner completely helpless. It was one of those times in your life where it's like your numb and stuck in one moment while life rushes by you. It's like your watching your life from a third parties perspective. It's was only for about two minutes but it's played for hours in my mind today. They got him back to a healthier level and rushed him to ICU. He was there for about 30 minutes and then taken to the O.R. to have the breathing tube placed. The risks were great for the procedure because they didn't know what to expect. No one at this hospital has experience with intubating JEB kids. The airway may be too tight, permanent damage could be done to his airway, he could bleed excessively.


The procedure was about an hour. They said the airway was really tight. The rubbery camera was bending against the swollen walls of his throat, so they had to use a sturdier camera. It took some time, but it was successful. A ventilator now does all his breathing and he's saturation level is 100.

He spent the first several hours fighting his tube and new condition (that wasn't supposed to happen). He was given large child size doses of sedatives but he really fought it. That's just like Daylon. Tough. Daylon is now being given 3 new medicines: one for memory, one to sedate him, and one to paralyze him. He'll stay this way until the mucositis heals, which is at least two more weeks. The good thing about it all is now he doesn't have to suffer through the horrible side effects of transplant. I'm so very grateful for that. He deserves some rest.

After he was sent down to the O.R. I text everyone on my phone's address book and asked that a prayer be said for Daylon. Brian and I went up to the seventh floor in the hospitals meditation room to be alone and pray for our son. After we sent the text the replies were so comforting to us. Everyone was so supportive. Thank you. Again, it's nice to know we're not alone in this. Have a happy day.

Daylon and his lime green shadow