05/03/10 The Big Move

Finally! We get to move down to the floor! Monday brings some good news. Eli is stable and doing better after his surgery and we're ready to head down to the floor. We'll be on the pulmonary service.

This is the first step toward home. We had some very specific conversations with the staff regarding the criteria for discharge. We want this to be crystal clear so there's no waffling when it comes to leaving the hospital. I think there's a tendency to say, "Let's wait another week". This tendency ends up keeping you in the hospital for weeks on end and the whole time you have no idea what you're waiting for. I'm bound and determined to avoid any more costly delays in getting Eli home. We've been sitting in the NICU for the last month watching and waiting to make sure Eli was stable. There's no reason we need to sit for another month on the floor. It's time to make the final push for home.

So far the hospital has been very non-committal in terms of telling us when we can bring Eli home but we've determined a few of the criteria. We need to show we can handle the home feeding pump for 24 hours. We did this once before when we thought we were going to be discharged at the end of February. There really isn't anything to it. You just hook up the pump and run it for a day. We also need to repeat the "car seat test" which means we have to sit Eli up in his car seat on regular oxygen for 30 minutes without any desaturations. Since Eli is going up to 12 hours on regular oxygen there shouldn't be any problems passing this test. We also need to make sure we can get the home equipment we need to support Eli. Patricia met with the home care people today and they assured us there wouldn't be a problem getting a home BiPAP machine. Finally, we talked with our pulmonologist and he would like to get one more sleep study using the nasal pillows. Last time we did a sleep study we were supposed to use the nasal pillows and they didn't so it was a complete waste of time and money. I think we need to question why we need yet one more sleep study and we need to have a clear understanding of what this test is going to tell us. If we end up moving forward with the sleep study we need to make sure it's done correctly using the right equipment.

That seems to be it in terms of the hurdles we need to get past. All of this assumes Eli continues to maintain his CO2 levels and doesn't have any other issues pop up. Now that we're on the floor it's time to push and get nasty about leaving if we have to. We would never do anything to compromise Eli's health or sacrifice his care but the level of care he is receiving right now from the hospital can be handled at home so there's no reason we need to keep living this nightmare.