You win some, you lose some

Bodie has had some REALLY eventful days recently.

THE GOOD.

In the last 2 days, Bodie has come off of both oxygen and Dopamine! Respiratory wise and cardiac wise, he has handled both weans like a champ, and was clearly ready to come off both! This was huge, because it has given us SO much more freedom to take walks both on and off the unit, and even go outside to the gardens! I'm really starting to see a lot of Bodie's personality coming back, which been such a blessing.

Today, he also had the stitches on his neck (from the vein reconstruction they did after removing the Ecmo cannulas) removed, as well as the stitches on his chest tube sites and the staples over his pacemaker removal site. His skin is healing so well! The last thing he'll still need removed are the staples over his chest incision (which should happen during his cath next Friday). 

Our buddy Maceo, who just transplanted 8 months ago, happened to be here for a clinic appointment with his incredible mom Monique, and younger sisters. It was such a blessing to have Maceo come upstairs and spend some time with Bodie. There's nothing quite like sitting with someone who can say "I've been there. It gets better."

The BAD.

But the gains haven't come in isolation, unfortunately.

The two biggest issues we're continuing to battle are sleep and feeding.

SLEEP.

The kid isn't sleeping.

I mean, maybe he'll get a 2 hour stretch at night.

But otherwise, it's 30 minutes here or there.

And it's not for lack of effort - both on my part and his.

We're doing relaxing baths before bed, running calms scents in the diffuser, relaxing music, lights off, etc. 

Nothing is helping.

 

He'll fall asleep easily, but then pops back up 90 minutes to 2 hours later, and then is up and down for the night.

Last night, they tried a new sleep medication which caused him to talk gibberish the entire night (which was actually hysterical but for the fact that he was losing sleep - he wanted us to get the (nonexistent) rabbits out of his bed, pop the balloons on the (also non-existent) balloon cake, and at one time, he even farted, noticed the smell, and then turned to me dead serious to ask irately if I had farted!). Needless to say, we won't be using that medication again. 

So tonight we're trying another new medication to help him sleep. But the lack of sleep is so frustrating, both for him and the medical team. He's progressing as well as he can in his PT and OT, but he's honestly just so exhausted that it makes it hard.

Which brings me to the next biggest issue...

FEEDING.

He's still not making much noise, so we know there's definitely some dysfunction in his vocal cord(s) and/or the surrounding tissues. He's now been scoped by ENT 3 times and failed 2 swallow studies. All studies show that there is no movement in either vocal cord, and his swallowing isn't yet coordinated enough to safely eat or drink without risk of aspiration. Yesterday, they cleared him to have small sips of water 5 times a day, and pureed foods (like applesauce and pudding) 3 times a day. He was so excited to get to eat for the first time in 3 weeks! I was excited for him, too -but still a little heartbroken. Progress is progress, but even so, this is what he's allowed to eat and drink.

Looks like a lot, right?

Until you pan out and see the cup size relative to the container of pudding to begin with.

Today when the new swallow study showed he was silently aspirating, I honestly couldn't help myself. The tears started. It's so hard. I'm trying so hard to be strong for Bodie, but my emotions are so close to the surface that it's hard not to let them spill over. 

I know either his vocal cords will heal or they'll do injections to help them along, that we'll get this figured out eventually. 

But it's so hard in the meantime. 

It is just so demoralizing on so many levels.

It's so hard to keep his spirits up in the hospital when he can't eat or drink anything. 

And we appear to be dealing with something more this time around, in that it's the actual swallowing function that he needs to do some rehab on. With silent aspiration, the swallowing function just isn't coordinated enough to protect the airway, and the body isn't realizing it. The ENT team feels pretty strongly that it's probably just too soon post op for him to have that coordinated yet, and in their experience, the swallowing function is the last to return after surgery. Given his overall body deconditioning that's happened as a result of Ecmo and the transplant, it's not surprising that his vocal cords and surrounding muscles aren't back and working properly yet either.

So, this is where we need your prayers something fierce.

Your prayers have reached far and wide and have brought Bodie so far in this journey.

Please please pray hard for him now.

Pray for his vocal cords to heal, and for his body to coordinate the swallowing.

He's a 14 year old boy who just wants to eat and drink his favorite foods! 

Please, please pray that this heals quickly so he can get back to eating and drinking as soon as possible! 

Please also pray that he can finally get some sleep.

His body needs it.

His mind needs it.

His mother needs it.

Just, please pray for restful and rejuvenating sleep for Bodie. 

It is incredible the recovery he's made given how little sleep he's getting. But I can't feel like his recovery would be so much quicker if he can start getting good sleep.

Please pray we figure out the sleep issue for him tonight! 

So that's it - pray for feeding and eating! Please, please, please!