Thursday, June 20, 2024

The Post Op Rollercoaster

The last 48 hours have been ROUGH. 
Cardiac wise, Bodie looks good. Really, really good. THANK GOD.
As far as we can tell, his HEART appears to be on the fast track for recovery.

Unfortunately, the rest of his body did not get that message.
The rest of his body is very clearly saying "HOLD UP. This heart has a new lease on life and that's great. But WE have been put through the ringer in the past 2 weeks. We've been lying in bed for almost 2 weeks now. We spent 6 days on Ecmo, then laid on an Operating Room table for the better part of 15 hours, then spent another 3 days on a ventilator. So, yeah, just SLOW.YOUR.ROLL."

- His lungs are junky sounding, with a lot of mucus in his upper airways.
- His muscles thankfully haven't atrophied, but are tired and out of use.
- He basically needed enough sedation meds to take down a horse for the better part of 2 weeks, so his body is missing those drugs something fierce right now, and he's basically a strung out junkie with serious withdrawal symptoms like body tremors, delirium, inability to sleep and restlessness. We dealt with withdrawal after his very first surgery at 5 days old, but luckily haven't had to deal with it in any subsequent hospital stays.
- His vocal cords are tired and we're not sure yet whether there is additional damage or they just haven't had a chance yet to recover from surgery and intubation. 
- Due to sensitive skin, he has several pressure sores that have developed. Most of them are just early stages, so the wound team is protecting them but they should heal just fine. But there is a more significant one on his sacrum. Again, it should heal, but it may take some time.
So, he just has a lot going on.

He was looking ok earlier in the day yesterday, but got progressively more tired throughout the day, and was having to work harder to maintain his oxygen saturations. He was able to work with speech a little bit before tiring out, and was just too tired to even keep his eyes open when PT tried to assess him. By the end of the day yesterday, he asked to be moved back to the high flow oxygen (he had been on a regular nasal canula all day). And you could hear all of the secretions trapped in his upper airway. He sounded like a staticky radio station when he breathed. 

Going into the evening, he was just so restless. He would close his eyes for a minute or two, then open them and change position. And he was experiencing full body tremors (which, for the record, are now officially my least favorite post-op symptom). He wanted me to stay with him and hold his hand. Which I did. I had planned to stay until he fell asleep and then sneak over to my parent sleep room and get some sleep myself. 

Except that he didn't sleep.
The nurse finally looked at me around 1am and said "He's not going to sleep tonight. This is delirium and it's terrible. I've seen kids go days and days without sleep. You just need to go get some sleep." So I heeded her advice, but told her to make sure to call me if anything changed or he just really couldn't be calmed. So she did. 

At 4am, she called and let me know he was just not looking good, and they weren't sure the tremors were actually just due to withdrawal at that point. He was warm, so they ran blood, and found out that his white blood cell count had skyrocketed. So they ran cultures, but because he is so severely immunocompromised, they can't take any chances while waiting for those labs to come back. So they started him on 2 different antibiotics, which should catch most bacterial infections. They also moved him from high flow oxygen to a CPAP mask, because it was clear he needed more support, and added in more breathing treatments to try to help get those secretions up. I came to his room and sat next to him for the next few hours, praying over him and asking God for yet more miracles. 

And it feels like He provided for our son yet again.

Because within a few hours, he started to settle out. 
His breathing became way less labored. 
The CPAP settled his lungs.
The breathing treatments, combined with suctioning (bless his heart, Bodie had to put up with that painful process every 4-6 hours throughout the day today), helped clear his upper respiratory tract considerably.
The addition of a Clonidine patch helped significantly with withdrawal symptoms.
Getting more of the narcotics and opioids out of his system meant he was more awake throughout the day today, allowing both PT and OT to work with him, getting him sitting on the edge of the bed and even standing 3 times!

By tonight, the picture had completely turned around.
He's still not out of the woods, but SO MUCH BETTER.

He still has tremors, but at least they're not whole body tremors anymore. They have settled enough that he can use his phone to text me, which aids considerably in communicating as he's still so quiet.

And, best of all, as I type this, for the first time since being extubated, HE IS SLEEPING PEACEFULLY - and has been for a couple hours now!!! Praise God!

Tonight, he attempted Legos for the first time since we got here.
It wasn't easy.
Not by a long shot.
He was exhausted and his hand tremors mean that not only is it hard to pick the Legos up, but even harder to piece them together and have the strength to snap them in place.
But he did. 
 If you know Bodie, you know he has an extremely low frustration tolerance (possibly non existent). So as I was watching him try to build, I was waiting for the frustration, the sigh, the "I give up" or "nevermind."
But I never heard that.
I didn't see one bit of frustration.
Just hard work and patience.
It took him 30 minutes to build something that he could ordinarily do in 5 minutes.
But he persevered.
And I could not be prouder of him.

So tonight (if you're still reading - sorry for the long entry tonight!), we'd love your prayers:

1. Pray for Bodie's lungs - for continued healing, and that he's able to clear the rest of the secretions from his airway.

2. Pray for Bodie's body - that he continues to regain strength and fully participate in PT and OT to get those muscles working again.

3. Pray for the infection - that the doctor's determine the cause of it and can quickly and effectively treat it. Infections are scary so close post transplant as Bodie is so severely immunocompromised.

4. Pray for Bodie's spirits - although we've seen a smile here and there, he's definitely not back to his usual self by any means. 

5. Pray for sleep - that Bodie sleeps well tonight and thus restarts his regular sleep cycle. 

6. Pray for wisdom for the doctors - there is talk of either moving Bodie to the floor or waiting until Monday, as they don't feel comfortable moving him over the weekend. Although Bodie is on a positive trajectory, there's still a lot we don't know and are still working out, and I think he'd be so much safer in the ICU over the weekend. Please pray that the doctors feel the same way.

7. Pray for continued healing for his vocal cords, so that he will get louder without needing any further intervention.

8. Continue to pray for the donor's family, without whom NONE of this would be possible. 



  1. Thank you so so much for this update. What an awful few days. I’m just so sorry. He’s young and this is so big. I’m so thankful he made a turn around. I’m definitely filing away some of his treatment for these post op hurdles should we ever come across them. Oh Bodie, rest sweet babe and come back to your mama. Praying sweet friend.-MB

  2. Just offered up all your prayer requests. God bless.

  3. What an inspiration Bodie is! God is so good and gracious! We'll be praying over these requests.

  4. Such a special boy and such a special mom - XOXO

  5. That video brought tears. Tears of for his suffering, tears of joy for his new heart and the hope for a wonderful future. God bless you all.

  6. Prayers continue for all your requests and Bodie’s dear family!

  7. Poor baby! And how hard for you to stand by and not be able to “fix” it like your mom heart no doubt yearned to do! Thanks for updating. We will pray for all those details. 💜💜💜

  8. Thank you for these updates. I'm grateful to be able to lift you all up before the Great Physician! So many hurdles! Psalm 121 is a good one.
    Bodie looks so handsome in the picture! I loved the sweet video! Way to go, Bodie! You're encouraging me to do my best too! All to His glory! Love you guys! Erin

  9. Hey Bodie, you have come so far! You are stronger than life. I'm sending a bucket full of prayers. I pray for your donor's family and so thankful for their donor decision. I pray for all the doctors, medical team and all those that took part in this journey. I pray for your phenomenal family. You are loved, even by complete strangers. Lord, we ask that you continue to give this young man all the strength possible and continued healing. 🙏💙🙏

  10. Your Oregon family has you in our hearts and prayers. 🙏♥️🙏