A hard Days Night

This is Tina here today. Figured it was about time I wrote one of our blogs. Ryan has done such a great job, I will try to fill his shoes as best I can...

It is with a lot of frustration, sadness and fatigue that we are writing this blog. As some of you have already heard, Ethan's decanulation (taking out the trach) was unsuccessfull. We had no choices left to us but to let them sedate him and keep him paralyzed. Seeing Ethan that way was so difficult, it was like we were back to those first days in the hospital. When we saw Ethan at the hospital he was doing great but through the night he began to have respiratory problems. They tried him on nasal CPAPP first which is what Columbus would do when they extubated him. It helped, but not enough and it was progressively harder for him to breath. By 4am they had to put a ventilator tube in as his trach sight had begun to close up and they could no longer put the tracheostomy back in. Not surprisingly, Ethan fought the tube. They had to begin another round of narcotics to keep him sedated but that was not enough for our strong little man and a nurse had to be with him constantly to keep his hands away from the tube and IV.

We were told that our surgeon would be in Saturday morning to assess him and make a plan. Jimmy, Lindsey, Kristen, Kevin, Ryan and I trudged back to the hospital in the morning to await another surgery. We signed consent and Kristen, Kevin and I waited for the surgical time and someone had to be holding his hands away from his face the entire time. We waited for hours and finally, at the end of the surgical day we were told that there had not been enough room for Ethan and the best they could do was get to him on Monday. They told us he would have to be paralyzed over the weekend to avoid extubation. We had no choices left to us but to let them sedate him and keep him paralyzed. Seeing Ethan that way was so difficult, it was like we were back to those first days in the hospital.

We were absolutely devastated.

We did not get home until very late and poor Kevin was exhausted as he was not able to nap at the hospital despite many attempts by Kristen and I. He fell right to sleep in the car ride and slept through the night. We were all so tired and exhausted, both physically and emotionally. Ryan went back to the hospital today and sat down with the surgical fellows and neonatologist and let them know how upsetting the whole situation has been. We decided that Ethan will go down Monday and get his trach put in and we are setting up a team meeting of all the doctors taking care of Ethan so we can make sure that something like this never happens again.

We had to say goodbye to Jimmy and Lindsey this morning. They were so patient with our fiasco of a weekend and we already miss them!

We have had such an emotional few days with some of the highest highs and lowest lows and it has taken quite a toll on our little family. We are hoping that tomorrow things will going smoothly and we can get Ethan back to his cheerful and friendly self again.