SFT

After moving over to SFT, Antonio had a rough start. His breathing tube was poorly taped to start with, almost completely covering his nose and right up next to his eye. They cut it when we got here to try to make it more comfortable for him, but that just caused it to be unstable. By Saturday morning his tube was basically hanging on by a thread, which was completely unacceptable. I started to give him his little sponge bath and he turned his head, almost pulling it out. I grabbed it and held it in until I could get the nurse to hold it for them to look at. He was retaped, but after that he didn't do the same as he had before. We had to go up on his oxygen over and over, he had an enormous leak around it, and it was basically decided that he needed a new tube after they finally realized it wasn't his lungs worsening, but that we should wait until his procedure on Tuesday to do that when he would already be under anesthesia. They literally used the term "limp along." That is brutal when it's your baby, every day counts when you're watching them be uncomfortable and decline. But I understood that there was more risk giving him the paralytic and sedative medicine twice. 

Antonio was supposed to have his surgery today at 1030. They instead came in and told us that the Cath Lab is down and he will be pushed back to Thursday. We are devastated. His breathing tube has had as great as a 91% leak at times the past 3 days. It feels like every moment since our move to SFT Thursday night has now been wasted as they haven't wanted to "rock the boat" for any reason until he had his procedure. The plan is to go ahead and switch out his tube today so that all of this will not be a complete waste. He had to get labs and blood and an IV yesterday as well as went without milk since 11pm last night for the procedure. He's starving and wide awake and has been fussy all morning. Which is now almost all for no reason. We hope and pray that we make it to Thursday without any major issues and that he actually has the procedure then, as they can't even begin to think about taking him off the vent until he's recovered and every day on the vent is damaging to his lungs. 

I had already typed up the first half of this update so I figured I would just add on our bad news to keep everyone in the loop. 

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