Delirious much???

At the risk of being repetitive, the last 48 hours have again been ROUGH.

Big picture and cardiac wise, Bodie continues to do really well.

We're so so grateful for that.

But we're dealing with what appears to be delirium, and let me tell you, it's no joke.

I had been warned about teenagers and delirium, particularly post-transplant.

But I didn't think we'd have to worry about it.

Because Bodie's had 6 heart surgeries before this.

So we totally know how to deal with the difficult post-op period. I mean, Bodie was walking the halls at 3 days after his Fontan.

We're pros at this.

We'll be fine.

And, to be clear, we WILL be fine.

But yesterday, we were NOT fine.

And today, we are NOT fine.

Let me give you an honest picture of what delirium looks like.

I hesitate to share these pictures.

But I want you to understand what we're dealing with. 

And I want other heart moms heading into open-heart surgery and/or transplant to know what to expect, because it's a completely different story than his previous surgeries when he was younger.

THIS is delirium.

It looks like Bodie suddenly taking an extreme interest in the ceiling and staring in fascination at it. For hours.

It looks like calling his name and him slowly turning toward you, and tracking you, but not actually responding to questions other than slightly nodding or shaking his head.

It looks like suddenly deciding he no longer wants to swallow his own saliva because "why would I want to keep that?" and instead allowing it to drool down his face.

It looks like him finally getting some sleep, but then waking up with a start, looking around very confused and not sure about where he is.

It looks like sitting bolt upright and wanting to get out of bed to work on sitting in a chair and build Legos...at 3am.

It looks like insisting on holding my hand until he falls asleep...except that he won't sleep longer than an hour at a time.

It looks like him being scared to talk because of his vocal cord issues, and only communicating via gestures and occasional whispers.

The team here has told me in many ways, it's the hardest part of the recovery at this age.

And I can't disagree. 

We are lucky that his delirium isn't constant. 

We have heard stories of friends' whose kids don't crack a smile for 10 days, and have a completely flat affect. Bodie isn't like that. We do see snippets of him through it. We have seen some smiles. He's not violent (I mean, sometimes, but I'd probably be violent if someone was sticking a small tube to the back of my throat to suction my snot too - but really he's very cooperative with everyone). We see his great sense of humor and witty comebacks, even through the fog. So we know he's there and we just have to be patient.

But patience is not my strong suit, to put it mildly. 

We see his heart looking good. 

We see his body slowly healing.

The culture showed the infection he's fighting is MSSA (a staph infection) in his blood, and he's responding really well to the antibiotics.

We see his body getting stronger by the day. 

2 days ago he couldn't sit in the chair for more than 2 minutes without unstrapping himself and trying to get right back in bed from exhaustion. Yesterday, he stood up 2 times, took a few steps, and sat in the wheelchair for almost an hour! So we're seeing the strength coming back.

We see his lungs healing. 

He's still on high flow oxygen, but they're slowly weaning it. We're discovering that his lungs don't like big changes, but we're getting there. He'll be off oxygen before too long. He's getting stronger and able to cough up more and more on his own, requiring fewer respiratory treatments.

And we see the delirium getting a little better each day.

This morning, he gave me the greatest gift. 

When the team was in the room assessing him, he asked for a marker. We gave him the white board and a marker and he wrote this:

He then drew a heart tattoo on my arm, and I drew a matching one on his:

So we see him in there! 

I almost started crying - and the practitioners in the room were really touched as well.

He's coming back online, but it's just going to take time. 

And it's exhausting.

As his mom, I just want my baby boy back the way he was. 

I'm trying so hard to focus on the small victories, and to remain positive for him.

But it's just.so.hard.

I know it will get better.

I know it.

But it's just hard to keep focused on that.

Once we're out of the ICU, I'm certain it will get better. 

But while we're stabilizing things from a vocal cord and oxygen dependence perspective, we're still in the ICU. They'll move him to the floor when they're confident he's ready, and I'm in no rush to race to step down before he's ready, and then have to bounce back. Once we're in step-down care, I'm sure the delirium will get better. In the meantime, we're doing everything we can in terms of getting him outside, working his muscles, keeping lights on and windows open during the day and off / closed at night. 

So, today, we covet your prayers for the following:

1. That Bodie comes out of the delirium stage. 

This stage is exhausting and demoralizing for the both of us. I know his physical healing will go so much faster when he's not fighting through a ton of brain fog.

2. That Bodie's vocal cord strength returns.

I'm worried that his right vocal cord may have been damaged (in addition to the left one that was already permanently damaged during his first surgery). Please please pray that there is no additional damage and that his right vocal cord strength comes completely back, allowing him finally to eat and drink!

3. That Bodie's strength continues to increase.

We see his physical strength increasing by the day, but it's still frustrating for him that his body doesn't respond the way he wants it to. The faster his physical strength comes back, the more independence he can gain.

4. That Bodie's spirits improve.

This is so stinking hard. He's always a kid who has had big feelings, and he's not talking much about them right now, but I'm certain he has a lot of feelings right now. I'm encouraging him to talk to me about it, but it's hard when he doesn't even want to try to talk. We're inching slowly towards talking, but please pray he'll open up about his feelings and we can help him through it. And he's just so down. We see occasional smiles, but even things that usually he would be so excited about don't elicit a big response. Again, our friend delirium has a seat at the table here and is making its presence known. He'll see psych tomorrow, so that should help. But please pray for him to see the great strides he is making, and for him to believe he WILL get back to 100% (well, actually better than 100% when all is said and done!).

5. That his heart continues to do well.

By all units of external measurement (echo, x-ray, labs, vitals, etc.), his new heart appears to be very happy in its new home. But he'll have his first cardiac catheterization this Friday to look at the pressures and check for rejection. Please pray all goes well and everything inside looks as good as it does on the outside. 

6. That he can come off of oxygen.

His oxygen needs keep going up and down, I think partially corresponding to his delirium episodes. It's hard on his body to keep going up and down, but we're trying to get to a point where he can be weaned, so the team is walking a fine balance of weaning, but not too aggressively. He's already off a lot of things - is down to only 1 peripheral IV, the pulse ox, an NG tube for feeds, and the hi-flow nasal canula. But getting rid of the hi-flow will allow him to progress toward trying liquids again, and just get him more independent. And, get it off his face so he can work on getting those facial muscles back up in full force again. 

7. For the donor family

Whenever you pray for Bodie, please please keep praying for his donor family. I've been asked what we know about the donor family, and the answer is nothing. UNOS has very strict guidelines about that, and even most (all?) of the surgical team knows nothing about the donor other than the blood type. Only the procurement team was given more info. At some point (I think a year), we will be permitted to reach out to the donor family via UNOS. UNOS will let them know the recipient family has sent a letter, and then it will be up to the donor family to decide whether or not to respond. We will want Bodie to make that decision, but I am hopeful that he will want to reach out, so that we can thank the family personally for the incredible gift they selflessly gave to him. For the meantime, we just ask for prayers for this family, for peace and the knowledge that their loved one is living on in Bodie and others (I don't know what other organs were donated, but at least some were, as the transport of the heart to LPCH was due to a delay in the other teams arriving at the donor hospital).  

Thank you so much for continuing to follow Bodie's journey, and for always praying for him. It has made a world of difference in his healing already!