Where the rubber meets the road

Bodie was extubated yesterday, praise the Lord! 

And if you haven't seen Dusk's video on Facebook chronicling the exact moment Bodie learned what transpired while he was sleeping, you can see it here (but be forewarned - you'll probably want to make sure you have tissues on hand):

By all accounts, Bodie's journey thus far has been nothing short of miraculous. The way his heart protected him exactly long enough to get him to this point, the way our schedules aligned perfectly to have him here at Stanford right now, the short time he had to wait for his heart...the list goes on and on and one day I'll list all of the miraculous ways God perfectly orchestrated the past two weeks.

But in the meantime, Bodie is doing well, but now at 4 days post-op has hit the part where the healing really starts to hurt. 

From a cardiac standpoint, his heart is doing fantastic. His body seems to really like his heart, his profusion is great and he's doing well. 

But from a neuro and muscular perspective, we have some work to do. Bodie was in bed and heavily sedated for 11 days. And due to his size, surgical history (i.e. the amount of times his body has seen narcotics in the past) and strength, they had to use some heavy duty narcotics to sedate him properly. So we're dealing with the really non-fun parts of withdrawal now. Or, what we're assuming are withdrawal symptoms. 

To be honest, when a nurse asked me if I thought Bodie was experiencing withdrawal, my response was more akin to "Seriously, you're asking ME? Look at me. I'm a 45 year-old overweight mom who's also an accountant. What exactly in that profile makes you think I would be a good resource for assessing narcotic or opioid withdrawal? The extent of my knowledge comes from Netflix and Hulu documentaries...but yes, he does look kinda like the guys in Dopesick, so I think so..." Suffice it to say, we're dealing with a lot of tremors, some hallucinations, sweating, yawning and other unpleasant side effects of coming down off such heavy duty drugs. The good news is that the team is used to this and knows how to treat it. They're transitioning Bodie to other meds to help with withdrawal. But it's a process and unfortunately one we just have to walk though to get to the other side.

We're also dealing with a lot of muscle weakness, but that should come back pretty quickly once he's back on his feet again. PT and OT came by today, and we had him sit on the edge of the bed and dangle his feet. Or, more accurately. the nurse and I completely supported his body while he shook violently and dangled his feet. But each time he does it we know it will get better, and this is just a transient phase.

OT came by to assess his swallowing safety to see how soon we could let him start to eat and drink again. He was really too tired to do anything they wanted him to, so we'll try again tomorrow. But he is very, very quiet. If you haven't been following us for very long, you may not know that Bodie's left vocal cord was damaged in his very first open-heart surgery at 5 days old. While he was only at risk of aspiration for the first 18 months or so of his life, his voice has always been quieter and more raspy because of it. We finally had vocal cord injections done about 3 months ago, which helped considerably. Right now, he's unable to make much sound. But it's not uncommon post extubation to be quieter than normal, as everything is still very sore and swollen. So our hope is that he'll get louder over the coming days, and that his cord was not reinjured. Really, his left vocal cord has never moved since that first surgery, so it's probably hard to do more damage to that side. But it's possible his right cord was injured this time. Or, because his right vocal cord has to work extra hard to make up for that non-moving left cord, it may just take longer for his voice to come back. The coming days will tell. In the meantime, he's frustrated because it's very hard for us to understand what he's saying. We try, but about the only things that have been VERY clear have been "I just want a freaking bottle of water!!!" and "There! It's RIGHT THERE!" when asked about whatever hallucination he is seeing in the middle of the room that the rest of us aren't privy to.  We've tried having him text us on his phone or write on paper, but because of the withdrawal tremors, his fine motor skills aren't quite there yet. 

So this is all to say, today was a frustrating day. We made a lot of progress in terms of weaning meds, going down on oxygen, etc. But this is so hard for Bodie. Yes he got a new heart and he's excited about that. And he knows he'll feel better soon. But today, he's only 4 days out from major open-heart surgery and his entire body hurts. And he still has IV's in his arms, a high flow cannula blowing oxygen up his nose at mach speed and pressure 24/7, and people making him do things that hurt all day long. He's exhausted and his spirits are low. We've hit the part of recovery that just plain sucks. 

Dusk and Sierra flew back home earlier today, which I was sad about. But I'm so grateful they were able to be here during the really scary stuff - that's when we as a family really needed each other.  

And, really, they don't need to be here for this part. Bodie and I have done this nonfun part many times before. And it doesn't last too long - just have to get through the next few days. Once he turns a corner, he'll be unstoppable. But for now, we just spend a lot of time sitting and holding hands.

 

So, for tonight, a few prayer requests we really need:

1. For Bodie's body to rest.

He's tired. So tired. He's trying so hard, but his body needs rest. Please pray he gets good rest tonight, so that his body will be ready to start moving more tomorrow.

2. For Bodie's vocal cords to heal.

Please pray for his vocal cords start to show healing tomorrow.  Because of his previous injury, we all have a little PTSD when he comes off of the ventilator and is really quiet, even though it's totally normal even without a vocal cord injury. But it just makes things so frustrating for him to not be able to communicate his needs effectively. And if they are injured, it will slow down the eating and drinking process as we'll have to have him scoped, do a swallow study, etc. Just pray he heals and we don't have to worry about that. 

3. For Bodie's spirits to brighten.

He's happy about his heart, but he's pretty bummed right now. Around here, they call it the "post-transplant blues": you expect to be really happy about getting a new heart, but you really feel crappy because of everything your body just went through. Sierra had some really sweet gifts for him, and he barely cracked a smile. There's really no distracting him from the misery right now. So just pray it lifts soon.

3. For our donor family

As always, please please keep Bodie's donor family in your prayers. In the midst of the tough days Bodie is in the middle of, I know it will get better. And we're envisioning all the incredible opportunities and times Bodie has ahead of him. We have this beautiful gift of hope only made possible by his generous donor family. But his donor family doesn't have any of that. And I'm certain they're struggling right now. Please, please pray for an extra measure of grace for them right now.