First and foremost, Grace is doing well- not really any changes, but doing well. We're doing our best to stay quiet and keep her still, rested, and sleeping. Sleeping=healing. When Grace does stir (wake-up really isn't the proper term), she's pretty pissed about it and goes straight to pulling at her vent, her art lines, her IV, or whatever mischief she can get into while amped up on drugs. During rounds this morning, docs think her agitation is due to being vented, and having chest tubes, not pain, so we're weaning her meds. Dopamine is gone, Milrinone is weaning. TPN still running, but also getting a slow trickle of Elecare to keep her gut active. Still no signs of Chylo, but since she's literally being fed at a rate of 2 oz per DAY (yes, you read that right), it will take FOREVER to see chylo... Or, maybe another day or two. :) If you're a G Tube Heart mommy, you'll get my humor.
Vent settings are sticking with the APRV bizarre breath pattern- she's at a PHigh of 18, and to wean to traditional vent settings, PHigh ideally will be at 15 or 16. We'll get there. Slow and steady wins the race. As long as Ms. Sassy is vented, the sedation must continue.
We've officially been in California for 11 days now. We've seen the gamut of weather- sunny, windy, rainy, cold. I feel like I can drive the distance between Milbrae and Palo Alto in my sleep. I officially know my way around Millbrae, almost as well as I do around Surprise. We finally got a room at the Ronald McDonald House on this past Friday, but the bed is HORRIBLE. Literally, if one person rolls over, the other person flies off the bed (think camping air mattress), so we've been sleeping in a sleep room (twin bed) at the hospital, or going back to Millbrae. All of our food expenses and rental car expenses have been coming out of pocket and it's adding up FAST. With no return home in sight, I'm getting a bit weary. Not to mention that I miss my son like crazy! Gavin apparently cries out for us in the middle of the night, and is now at the point where he won't look at our picture. :( My heart aches for him- I know he has NO CLUE what is happening, and I wish I could make it better. Being a mom, my role is really up in the air right now. I'm feeling more out of sorts than ever before. Instead of being in charge of my daughter and son, right now I'm in charge of nobody, and have no control over either kid's environment. Talk about feeling helpless...
Insurance drama today doesn't help with things. 2 months ago I began calling both insurance companies (our private, and state MedicAid) to give them a heads-up of what was coming and to iron out any issues before our trip. Both stated that we were green-lighted, and nothing to worry about. NOT TRUE.... I received a call today from the MedicAid benefits coordinator. Nobody advised them from either Dr.'s clinic (Phoenix or Stanford) of the surgery. Since nobody there was notified, they didn't offer assistance. Apparently, in a perfect world, we would have had our airfare and lodging covered, and possibly food assistance. REALLY?!? I've been here 11 days and I'm just hearing about this now?!?! The lady was super nice and apologetic. Since there was no notification, payments weren't pre-authorized, but she told me not to worry about it, it'll be handled behind the scenes. I can't even imagine the bills we would have received.... OUCH! She's working her hardest to get us moved to the Stanford Guest House (on their tab) for the remainder of our stay. If we can move there, we can hand in our rental car (more savings!), and take the shuttle provided. She'll call me in a few hours with news, but I'm pretty hopeful for now. It would be AMAZING to be in a comfy environment 2 miles away from Grace. I'm not used to being away, considering in Phoenix we stay physically in the ICU. Here, we're lucky to have a seat! It's very different... but different, not bad.
Hopefully we'll get some help for meals- it's stupid expensive to eat here. $14 for lunch today! That's a chicken sandwich and 2 chicken enchiladas... I'd much rather do Chipotle for less!
Alright, I'm done venting. Off to hold Gracie's hand... Thanks for prayers, all!