We made the decision ...

Emily was discharged from the hospital last Thursday late at night, after a 16 day stay and antibiotic treatment for a line infection. She gets line infections because her motility is horrible, and causes a leaky gut. So we went home Thursday night, and I got her TPN prepared. When I lifted her shirt to connect the TPN to her Broviac, I realized that the nurse who discharged us must have pulled the line somehow. It was coming out of her skin a bit and had been bleeding. I took pictures, redressed it, and sent the pictures to the GI and TPN nurse. They called the next day, Friday, and said to bring her in for xrays. We had to be sure that her Broviac line was still in far enough to use for TPN. As I prepped us for a quick ER trip for an xray, Emily spiked a fever. Of course. So we headed to the ER, only 14 hours after being discharged. They did labs and blood cultures, but her fever had dropped and she was acting fine. They sent us home. Saturday night they called to say her cultures were positive and we had to come back inpatient. :( We went in late Saturday night, and got a room of the pediatric floor early Sunday morning. This coming Monday, Emily will go to the OR to have her Broviac pulled. The will place an IV so that she can continue some nutrition, although it won't be her regular TPN. She is scheduled for surgery Wednesday, to place a new Broviac. She is also going to be getting a tracheostomy. This was a hard decision. We have gone back and forth over whether she should have a trach or not. Her breathing is great, her lungs are clear. But her vocal chord spasms are out of control and there is nothing else we can do about them. When she has these spasms, she has horrible coughing episodes and gagging/choking spells. She desats, turns blue, but worst of all she really PANICS. It scares the crud out of her. We can't easily suction her, because of her oral aversions. I manage to suction her orally but it's not easy. Trying to deep suction her, through her nose, takes four adults to hold her down. It's not feasible. So in order to prevent aspiration and allow her to breathe without coughing and panicking, we are going ahead with the trach. It is an impossibly hard decision to make. I am trying to remain optimistic. I am hoping that she will be able to make noises and laugh audibly, even with the trach. This is big surgery she is having. She will be taken to the PICU after surgery. I will try and update here as soon as I can!