Blech... Insurance Drama

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!

The Long & Winding Road... to Recovery

I sit writing this by Grace's bedside, listening to the continual rhythmic beeping of her monitors. For the first time, post-operatively, I'm filled with peace.

Grace's surgery was a success! Dr. Hanley is truly an AMAZING man- he is humble, humorous, honest and just amazing. Grace's surgery started at about 7:30am Thursday morning, with her first dose of Versed. She left our sight laughing, smiling, and sticking her tongue out- that is the BEST way to say a goodbye to a kiddo going off to the surgical unit. I actually laughed, not cried! Well, okay... I cried when she left my sight, but I was super strong mama kissing her farewell. ;)

Dissection lasted a LONG time. Dr. Hanley met with us around 10 am, and he hadn't even headed into the OR suite at that point, letting the anesthesia team do their thing, and the fellows do the dissecting. Dr. Hanley estimated at that point, before going in, that he wouldn't be able to restore flow to the upper left lobe, but would reconstruct the upper right PA's leading to the upper right lobe, he'd attempt a 20mm conduit, and that the whole surgical portion would last until about 2 pm.

Being antsy, my hubby suggested we take a walk in the fresh air and sunshine- I was hesitant, but I'm super glad I listened and went along. Stanford University is BEAUTIFUL! We went to the Hoover Tower and took in the beauty and silence- amazing! After, we walked to the Memorial Church. We were lucky enough to hear the organ play (I hear this is a VERY unusual occurence, and only happens during church services). The organ boomed out a jubiliant tune, and literally seconds later, we got a call that she was doing amazing, and things were going better than expected. I truly felt peace- what a spiritual moment!

Dr. Hanley met with us around 4pm- he was able to get a 22mm conduit in place, and restore flow to BOTH sides (remarkable!!). Dr. Hanley sees no reason why this size conduit shouldn't last a good 10 years, and now she'd be a candidate for the Melody Valve procedure if/when the valve becomes faulty. The right side of her heart will slowly reduce in size, now that the pressures are down. There was a fair bit more work on her lungs than expected, so she's been recovering from a re-perfusion injury.

Originally we were told that we'd be out of ICU in about 24-48 hours post-op. Unfortunately, due to Grace's history of sick lungs, added to the complexity of the surgery repair to her PA's, we're far OFF that estimate. Grace will likely be intubated (sedated) throughout this week, then hopefully to a high flow nasal canula. The floor won't take her unless she is on 3 liters of O2 or less- so that could potentially be a few weeks off. It's easy to become overwhelmed under these circumstances- Grace is completely nonresponsive, and we literally are just sitting, watching her breathe for 12 hours/day, only to go to bed, exhausted, at night.

I'm coming to terms with the longer hospital stay, but I'm human, and had my breakdown. Today, I'm filled with more peace- I can see small changes, they're giving me hope and I'm seeing the light at the end of the tunnel, granted a LONG tunnel, but we'll get there. Thankful for the prayers, the blessing of friends, and the gift of family!

We made it to Stanford!! We also went a on Grace's wish trip, but since I'm typing this from out of state, I'll post wish trip details when we get home.

Yesterday Grace had a heart cath with Dr. Perry. The cath lasted about 3 hours. Here's the info for surgery that will take place Thursday with Dr. Frank Hanley.

Dissection is planned to take 2-4 hours. They'll dissect a bit more than originally planned to be able to get to her upper lobe and outlying PA's. Conduit change as planned, hopefully 15mm or bigger. She has a 12mm now. 14 or bigger makes her qualify for the melody valve in the future if her valve fails but conduit still open.

Cath showed that her upper left lung lobe has no blood low. Lung perfusion test completed to see more in depth. Still no results. Unsure if upper lobe of left lung hasn't had flow long-term, or if this is a recent issue. The degree to which the lobe and arteries are damaged will give them an idea of timeline.. If Dr. Hanley is able to find a viable artery it's possible he can rehab and restore. Unfortunately, upper lobe on right has severe stenosis and is headed to the same plight. Thankfully, Hanley can rehab and fix, and also ensure no future lobe flow loss since he is somewhat of a pioneer in this situation.

The PA's are quite close to the Frenetic nerve. If the frenetic nerve is messed with, it causes a diaphragm issue. We won't know if there is an issue until extubation, and will be apparent if she struggles with breathing. Apparently, the frenetic nerve controls the up and down mechanism of the diaphragm, so the issue is that the diaphragm could be "stuck" in the up position, requiring another small surgery to stitch the diaphragm down.

Each PA repair takes about an hour and the conduit change also takes about an hour. Actual operation time will be 6-8 hours, but we won't see her for probably 10ish. Bypass time is expected to last 3 hours, and goal is to keep heart beating, since the VSD fenestration healed itself.

There is a concern about chylothorax since she's had it twice before. If it happens, well wait until she dries up. I asked about the JP drain that PCH sent us home with in the past only to receive stares. Their response? It's not in our medical practice safety guidelines to do that.

Also asked why we didn't know about the lobe flow issue before. Their politically correct reply? PCH probably only sees surgeries with her complexities maybe a few times a year, Hanley sees this several times a week. Its his life's specialty- he knows EXACTLY what to look for. I feel so comfortable with my decision to come here. Only upset I didn't know before birth so we could have avoided some of the complications that we've seen since operating at Phoenix Children's.

Grace is now running a low grade temp, I'm assuming because of anesthesia? Also now super junkie because of being intubated. Worried that surgery could be affected... Pray for health.