Ahhhh....we are working hard at not thinking about Bodie's upcoming surgery. Between 3 (yes, 3!) of our good buddies Fontanning this week and 2 other heart friends getting transplants this week, avoidance has been tough. But we've been trying our hardest. I've been taking the kids out to my parents place in Palm Springs as much as I can, both to get some quality time in with them and to keep Bodie in isolation from germy places.
We have been swimming nonstop. Sierra has turned into a total fish - I am LOVING watching the improvement in her swimming skills this summer! We've been working on learning to dive and improving her strokes.
(it's too bad these kids don't have a good quality of life, right?)
Bodie has been showing off his fashion sense
(for the record, he has on backwards underwear, under plaid cargo shorts, under backwards overalls)
And we got a pre-surgery haircut (knowing he won't get a bath for awhile in the hospital, we didn't want to have to deal with the extra mop!)
And we've been loving on Gigi and Popo!
Please keep praying for us - some specific things to pray for now that we're 10 days out are...
CHLA is FULL right now. I mean, full. As in, kiddos are getting rescheduled left and right. Ok, maybe not left and right, but let me put it this way - we know of 3 kids this week alone who have had their surgeries postponed until later this summer. Something about a perfect storm of some unexpected babies needing surgery and other kids not getting of the CTICU as quickly as planned. Since Bodie is doing well and stable, we're getting pretty nervous that we could be next on the list to get bumped. Of course, we're grateful that Bodie is so stable, but having to reschedule at the last minute is not high on our list of things we'd like to do. My best friend is flying in from South Carolina and Grandma Jan and Popo Alan are driving out from Reno to help us out; rescheduling would obviously not be ideal. And, of course, this whole process is so emotional and it would be fantastic to not have to go through it more than once.
2. Rhythm issues.
Bodie is in EAT pretty much all day every day. The poor kid is out of breath and winded all.the.time. It's so hard to watch. Most nights, he comes out of it, but not all. And many nights, his heartrate is totally erratic, alternating between fast and slow. It's been scaring the crap out of me, to be honest. His cardiologist thinks it's possibly just the result of his heart attempting to come out of EAT, but no one knows for sure. We've decided not to restart the Amiodarone (we'd love to avoid going back on it if possible). Instead, we'll just try to hold on until surgery and they'll attempt another ablation during the Fontan itself. It sure would be fantastic if he could just come out of the EAT and it could be a nonissue. Please be in prayer specifically for his EAT.
We're 10 days out and trying really hard to just power through and not think about this. We know Bodie needs this. It will give him so much more energy to do the things he wants to do. The Fontan isn't a great solution, but frankly, it's our best solution right now, so we'll take it. But there are just so many things that can go wrong with open-heart surgery and the recovery is so tough on many of these kids. Lots to think about, ruminate on, freak the heck out over. So please just lift up our family in prayer. Pray for peace for Dusk and I, that we can get through this next week without too much anxiety.
I would ask for prayers for peace for Bodie and Sierra as well; but, to be frank, they apparently aren't having any problems finding peace these days.
Just thinking of you guys, I cant imagine the wait before Bodie's fontan. If you could email me your address that would be great, I read about your 'treasure box' for Bodie and would love to contribute something little. My email- firstname.lastname@example.org.
I had the honor of taking care of many kids post-fontan in the PICU, some of my favorite little patients....
Lots of Prayers for you all from Chicago.
Patty Fischer (Mary Lynn Fischer's daughter :))
Well, it is unreal about the rescheduling issue. But......it is better to be one of the rescheduled ones than to be one of the rush rush emergency ones. Waiting must be very hard. Prayers to all of you.ReplyDelete