05/06/2007

Okay, so this is where we are at. Erik and I had an extremely difficult weekend. Monday marks 140 days in the NICU, still with no end in site. Saturday Erik and I held Emery, and all he did was cry and fuss. He arched his back and screamed and kept dropping his sats. Nothing we did helped him. This is where it gets difficult. We can't just get up and walk around with Emery. We can't put him in a car and drive around. We have to have 2 professionals come and help us reposition him, and when Emery is mad he yanks at his tubing, so we know that if he pulls them out he can't breathe and we run the risk of his lungs mysteriously collapsing. So, we have that frustration, a screaming baby, and monitors that beep continously. It doesn't make for peace. Today I was holding Emery and he was throwing a fit and I actually had to yell at someone to come help. He actually unhooked his tubing while I was pumping and I couldn't get up and help him so I had to scream for someone to come help again. Anyway, we were both stressed. Add that stress to the fact that after what we heard Friday we were under the assumption that Emery should be trached. We asked him about the trach conversation that allegedly took place on Friday, and he said he'd never mentioned it, but it wasn't out of the realm of possibility, so Erik and I have decided when we want the trach to take place. If Emery gets sick and he has to be reintubated or if he needs to go back up on pressures, we want him trached and sent home. If Emery gets stuck on a pressure and cannot go any lower, we want him trached and sent home. That's where we are at. We're not going to screw around with back-sliding. The doctor said that he didn't want to scare us but they have lost babies from getting sick so he doesn't want anyone who is sick around Emery. That's fine. Every one is extremely paranoid about being around Emery anyway. We'll know shortly where Emery stands on weaning with CPAP. Oh, and to top it all off, Emery now has notches in his nostrils from the CPAP in his nose. We've both decided that we've had enough. There was some good out of talking to the doc today, though, and that was about the kidney stone. I told him how they said they weren't going to do anything about it, and he said that he was going to check on it tomorrow and reevaluate to see where they were at. He doesn't know if they can or can't go in and break it up, but he at least wants to know if it's moving. He also is weaning Emery's pressure tomorrow morning down to 13 from 14. We'll be able to tell how he tolerates some weaning. I have a call in to Dr. A. I will be able to tell him where we stand with the trach. I just feel like we never move forward. The nurse did say that as far as the chronic lung babies were concerned she really felt Emery was doing well. The doc said Emery isn't in the hall of fame of worst lungs but that doesn't mean he can't end up that way; i.e. if he keeps getting sick. The goal is to have Emery home before RSV season starts (which is sort of funny because we are still in RSV season here) which means we have to go through the summer yet.