Sunday, August 18, 2013

Fontan Post Op Day 3: Here comes Debbie Downer...

Or should I say "Donald Downer"?
 Man, today was rough. Bodie slept beautifully last night, was out from 9pm to about 5am, sleeping soundly, satting 85 (on 1/2 L of 02) and barely even waking for vitals. I thought that was a great preview of the day ahead. I wish.

Bodie had such a rough morning. He was clearly in a lot of pain and, on top of that, was saying he had a tummyache. I expected this - it's pretty common post-Fontan stuff. We were able to give him a glycerin suppository and he had his first poop since surgery. Yay! And he did seem to feel better physically after that, but emotionally, he was just checked out. That face above was pretty much what we saw. He closed his eyes when rounds were going on, pretending to be asleep. He wouldn't really look at anyone or reply to them and fought me on just about every med I had to give him throughout the day. It was really hard to watch. Like the belly issues, I was expecting this as well. We've seen a lot of our Fontanning buddies go through this. And it was every bit as hard as I expected it would be to watch. This whole experience is really hard for anyone, especially a 3-year old. I know it's what he needed to do in order to cope with this the only way he could. But even so, it was SO hard to watch him react this way, to see our normally vivacious, larger than life 3-year old just totally check out. 

We had to work very hard today - to get him to eat, to get him to drink, to get him to smile and have fun. We did have some successful moments, but they were pretty few and far between. Thank God Dusk is so great at working to entertain the kids. I have to give a huge shout out to Dusk. I don't mind the "scary" stuff - the lifting Bodie with tons of lines and tubes in, giving him meds, getting thrown up on, sitting for hours on end at the hospital, making decisions about when his sats are low enough to intervene, etc. But the "soft" stuff is where Dusk excels. I swear, he would stand on his head for hours, folded into a pretzel, with the iPad angled at just the right angle if it was what Bodie needed to take his mind off everything and be entertained. I just don't have the patience. At one point today, Dusk was standing there, opening and closing 3 different singing cards at once over and over again, just trying to get Bodie to crack a smile. I am so grateful he and I are in this together!

LOTS of work on making Bodie smile - 
Daddy and Bodie playing the new clam catcher game Jennifer brought over yesterday.
Bribing Bodie to smile by giving him his new pillow case, handmade by our sweet heart friend, Melissa, and telling him he had to smile for Baby Ella (Melissa's daughter and Bodie's favorite heart buddy).
Sierra trying so hard to get Bodie to smile (was finally successful once he got a popsicle with it!)
Discovering that McDonald's soft serve ice cream totally falls into the low-fat diet protocol! 
Sierra and I passing time by decorating the windows of Bodie's room (don't judge the artwork - it's not my forte - or, clearly, hers!)
Awesome heart mama friend Christie stopped by for moral support, to bring watermelon for our little man and a cool new Hulk toy from her sweet son! 

Today was hard on so many levels. Bodie's struggling. I think it's all normal Fontan stuff, but it's making him pretty miserable. His x-ray this morning looked a little hazier (meaning there's a little more fluid in the lungs than they'd like and his sats are definitely lower than they like - they've been dipping tonight and he's satting 75 as I type this, so they're going up on his 02), his tummy hurts him and he just doesn't want to be here anymore. I hear most kids bounce out of this phase in a day or so. But Bodie won't get that lucky, since we're headed back to the OR tomorrow. So, lots of prayer requests tonight.

1. Please pray that his pacemaker surgery goes quickly and without any complications tomorrow. 
It should be an uncomplicated procedure. But this is Bodie, so anything goes. Although they will have to crack his chest, he won't have to go on bypass and should be extubated in the OR. Please pray that he comes back to his room off the ventilator. Please also pray for peace for Dusk and I. Going into major surgery so soon after the last one is really emotionally draining. And right now, it feels like discharge and life on the other side is approximately 800,000 lightyears away. We know it's not, but darned if it doesn't feel that way. 

2. Please pray that they can figure out why his sats are dropping. 
My guess would be that it's because of fluid on his lungs and that we need to be more aggressive in getting the fluid off. Although his fluid output hasn't been unusually high at all, his x-rays continue to be a bit hazy and I'm sure that's why he doesn't feel great. He's already on 3 different diuretics - Lasix, Aldactone and Dieuril. But there is definitely room to increase the frequency of them. I think they haven't wanted to do too much of that yet since they know he's going back to the OR. Please pray that once he gets back from surgery, we can start actively working to get the fluid off and get his sats back up. And please pray that we can start losing lines and get him up and moving ASAP. This kid needs a serious change in scenery, for his mental health!

3. Please pray that emotionally he will react ok to this additional surgery.
Although Bodie is very smart and observant, so probably has an idea of what's going to happen tomorrow, we haven't actually told him directly. Please pray for wisdom for Dusk and I, that we can tell Bodie in such a way as to not scare him. And just as important, PLEASE pray that this additional surgery won't break Bodie's sweet spirit. Seeing him totally checked out today was so hard; I'm so scared of how upset he's going to be when he realizes we did it to him again. Please pray that he will bounce back quickly, not just physically but also emotionally.

4. Please pray for Sierra.
(Sierra and I at the CHLA playground today.)
We are so grateful for Grandma Jan and Popo Alan to have taken time out of their schedule for our sweet girl this past week; and so grateful for Gigi Nancy and Popo Bill to come grab her tomorrow and love on her for this next week. This whole thing is hard on Bodie; and it's hard on Sierra. Not hard physically, but so hard emotionally. She misses us, she misses her brother and she knows there's this huge thing happening that she's not a part of.  At the end of the day, she's still just a little 6 year-old girl having to deal with things that require a great deal of maturity. There's no chapter in the parenting handbook on how to help siblings cope with having a sick child in the hospital for a prolonged period. Dusk and I are doing the best we can, but this is really hard. Please pray for her little spirit in all of this as well.

Thank you, as always, for the constant prayer and support. It means more to us than we can possibly say.

We'll update tomorrow as we have updates.



  1. Hang in there Amy!! Your are tougher than you know it.I now see who Bodie takes after!!! He will be home before you know. I will continue praying XOXOXO

  2. .

    Lord we beg you to spare this child any suffering. Please Lord guide this family let them feel your amazing power and grace, bestow upon them the love, faith and guidance they will need to conquer these trials, we praise you Lord.

  3. Hi Bodie! Keep smiling buddy.

    Love you,

    Mr. George

  4. I will be praying for you Bodie! Hang in there tough guy.

  5. Hi again Bodie! I meant to tell you... You have a lot of people praying for you little man! Everyone is talking about what a good looking guy you are & what a nice smile you have. I've been showing off your pictures to everyone I know. Love ya, Mister George

  6. Amy, holding Bodie, your family, and Bodie's clinical team in the light ---for strength and resilience, and that the procedure goes smoothly today.
    What wonderful and loving parents Bodie has. --CLannon