This one is very hard to write. It has been a very emotional day. I called the PCICU at 3:45am to check on Josiah and he was doing great. His nurse had just drawn a blood gas and hadn't gotten the results back yet but said he was doing great. I called back at 4:45am to hear the results of that gas and the nurse who answered said, "Has Ryan (the fellow on in the unit overnight) talked with you." I knew that wasn't a good sign. When I said no, she explained a little of what was going on and then gave the phone to Ryan. He explained that at about 4am Josiah got irritated and began having a meltdown. He was called in to help and at that point Josiah's heart rate had dropped to 60 beats per minute (which is when the start chest compressions) and he was blue. They manually ventilated him for a bit and got his heart rate back up. Ryan stuck a catheter down Josiah's nose and was able to suction his airway out. He pulled out a lot of mucus. The got a blood gas at that point and it came back really bad. Showing that Josiah's body was under a lot of stress. At the time that I was speaking with him he said that Josiah had calmed and looked better. They even did another blood gas and it was heading in the right direction so Ryan thought that Josiah had recovered from this episode. At 6:30am we got another call from Ryan saying that Josiah was doing worse and it looked like they were going to have to put the breathing tube back in. We came over to the hospital in hopes that Josiah would make a turn around but by the time we got there they were just finishing up putting the breathing tube back in. Needless to say it has been an emotional day. We have cried a lot. I was really hoping for him to do better this time. Once again the awful part about being hopeful is when the thing your hoping for doesn't happen as you want. Josiah's life is a miracle no matter what and we continue to hope in the final outcome. The journey to getting there may not always be what we want or expect but the prize of Josiah is more than worth it.
So we move on toward what looks like a tracheostomy. This feels like a lonely road. In all the heart families we have meet along this journey we haven't met any with babies who have needed a trach. I have found one family, through the blog world, that seems to have a been on a very similar journey. They are family all the way out in California with a precious baby named Rudy. I've been asking here in the unit if there are any families that they could put me in contact with that have needed a tracheostomy. It would be really nice to be able to speak with a family that has lived through this experience as it seems entirely overwhelming. This is a huge adjustment to our "new normal."
It is late. More to come.
-A heart that holds ons
The Adventures of DJ and Katelyn {{{HUGS}}} and lots of prayers