It's been a particularly frustrating day. It wasn't without love and smiles, but it was frustrating none-the-less. We thought we were on track to get this bronchogram scheduled...only to find out they haven't scheduled it yet and instead wanted to do a bedside scope to check for that possible trach ring. We ran errands, then I kept the kids at the RMcD house while Alan stayed with Chloe. Not that a three and five year old wouldn't have wanted to help and touch that awesome equipment that had already been sent up to her room, but alas, Legos with mama back at the house was the more popular choice. But after waiting an hour...then nearly another hour for ENT to show up, all we were told is that they weren't looking for the possible trach ring, but just checking size of trach and for any blockages. Sigh {--my new favoritely used word. Favoritely is a new word too. Just made it up}. This means we waited on the edge of our seats all day praying unceasingly that the trach ring didn't actually exist only to find out they didn't even check yet. We did, at least, find out that she needs a longer trach, that the one we just tried is a still a bit short. That should be sent up soon, but unlike us getting to do a new-size-trach-change at home unassisted, here when admitted, it's ENT responsibility and we're not allowed to touch it. So we at least, very least, know we're here until they can get that done. I think. I hope. I wonder?
We're getting weary. Not tired. We're actually getting sleep for the first time in ages. We're getting time alone with the kiddos-uninterrupted quality time that they've desperately been needing from us, their mama and daddy. But we're...I can't find the word...restless? So far she's not testing positive for a virus, but there has been some junk in her lungs. They're all using verbage like, "Well, they can't do the bronch if she's still go this virus...," but then again, no tests have shown a virus yet. And if she did have a virus, now ENT wants to wait another 4-6 weeks to ensure virus free before doing the bronch. But then again, there's that off chance it wasn't a virus and we're pushing hard to get this done before they'd send us home...or would they send us home for some extended healing time only to come back in a couple weeks?? We don't have answers to these questions yet.
Here's the big picture:
Trach Ring = Reconstructive tracheal surgery combined with heart surgery. More time to heal. Needs to be bigger//airway bigger//better chance to heal good = push back heart surgery Glenn procedure so she's great size for healing from both.
>>This means if there's a trach ring, perhaps just repeat BT shunt with a bigger shunt for right now so that she can a) get a bigger shunt since she's outgrowing this one and b) push back Glenn. I asked if till fall, they said probably further out than that.
If No Trach Ring = Glenn candidate. No sense in opening her up to do a BT to get her to grow more at this point because it's ok to just do Glenn. When that would be? Perhaps sometime soon to sometime later. Catch that? Aka, no clue just yet, but she's showing us signs of needing it on the sooner end.
{Hang with me here...Alan might edit this post because I might have just messed all of that up. We'll just smile and nod and go with it for now}.
But when does the bronchogram get done? Great question!!! We keep asking!!! But to no avail. Apparently ENT is the one that's supposed to schedule it, but they haven't. At this point, even if they put it on the schedule asap, asap is more like 4-6 weeks. Our team {her primary team and heart team} pushed to get this moving back in April, so you can sense our frustration here. We don't know if this means send her home tomorrow or the next day or this week yet, let her rest from the bug, and come back next week if they can bump her {seriously} up, or if it means wait a month because of the virus and come back for it. Or will they say it's scheduled now 2 weeks out...but can we stay and let her ride out this stress and get it done before leaving? Will insurance even touch that one?...
But one thing we do know.
She's starting to show us those signs that this shunt needs upgraded. Not urgent//asap//emergently, but soon.
And we're having trouble getting a few answers. And we're frustrated. But we're trusting that the Lord will grant us all wisdom and things will be done in His time. Because one other thing we know is that He's in control. I have moments {days?} where I lose trust. Not completely, but it's like I start to back up a step and say, "Lord, this isn't working, and I'm not saying I'm going to do it my way, but I'm going to consider possibly perhaps maybe thinking of doing it my way," but by the end of the evening, when my mind has processed it all, I remember these words: "For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:9
Our time-line is kinda crazy, huh? So much of things we want on our time table. But this story is His and He wrote it long ago before the fireflies lit the summer nights for the first time. I wonder if before the Fall, if Eve chased fireflies in the Garden of Eden? When evening stars were bright and the sky turned navy blue and silhouettes of oak trees started to cast nighttime shadows and the fireflies were bright and yellow and free and new.
I was walking Abi up to the front door of the RMcD house last night, and we saw the first firefly of the season. We tried to watch for another one by the daisies that were bending toward the lantern light on the front porch, reaching over the dew stained grass...
This is their summer. While most kiddos are swimming in city pools and breaking ribs on slip-n-slides and walking barefoot through blades of freshly cut grass while sucking down freezer pops, our kiddos are washing their hands, keeping voices quiet, happily dancing down the halls of Children's Mercy and singing to their sweet sister in her bed on 4 Sutherland. They're begging to play in the basement playroom of the Wylie house. They're contentedly standing in the house pantry asking if there's anymore poptarts, of if we miss the evening meal, can mommy just make the mac-n-cheese they saw on the shelf in there? They don't ask questions. They just roll with it. This is their life too-this hospital stuff is pretty much all they've known for the last year(s) and they're amazingly at ease with it. I need to learn from them. Our lives don't feel "interrupted" by needing to drop everything and stay here right now. It's actually, oddly, almost a vacation of sorts away from constant beeps and getting sleep and not having that slight fear and panic in the back of our minds on a daily and minute basis that her care and safety is completely up to our knowledge and skill and energy levels. And our minds can rest for a few days and not worry about nursing schedules or drawing up meds. Don't get me wrong-we don't want to have to be here, but in a way, we're thankful. We have a great hospital with amazing doctors and nurses, Chloe's getting great care even as we sort out the next step, the kids are getting much needed 'us' time, and we get to come home at night to a beautiful roof over our heads and warm meal in our bellies provided by the love and hands of complete strangers that we call our new friends. I still tear up and having trouble leaving her at night of course, but this is the closest thing our family will have to that much needed summer vacation that so many are planning right now.
And you know what? We're ok with that. Because we're in this as a family and we'll do whatever it takes to love each other well as this story He's writing plays out.
G Family Summer Vacation 2015
The hotel we're staying at for this summer vacation wasn't made by a development company. It's not owned by billionaires with streams of destination resorts. It's build with love, by love, for loving on others. It's made of blood, sweat, tears, love, and even loss. It's a beacon of hope in the midst of storms. I feel like, sitting on this porch, I should be looking out to a deep and wide aqua billowing sea that reminds me how big God is and how little I am.
{I hijacked this room and made it my 'office' tonight!! Who wouldn't!?}
Making Father's Day Cards. A week early. 'Cause we're efficient like that. Oops...
{Ignore the Daddy. He was being silly for the camera.}
Every vacation needs some individual screen time to zone out.
Some kids get Disney World for their summer vacation. He gets Legos and thinks it's better than Disney world.
She's taking vacation seriously and catching up on rest. {And that's a trach mask delivering humidified air and sometimes oxygen. She's not back on her vent if you were curious}.
Chloe's room with a view.
