Monday, July 29, 2013

Waiting to Exhale...

The day we got Bodie's diagnosis, I feel like I took a deep breath and have been waiting to exhale since. The Fontan has always been that moment where I envisioned I'd get to exhale, the finish line of a very long marathon. One after which I could tumble to the ground, take a huge exhalation and relax for a good, long while (although it is not a permanent solution, if all goes well, the Fontan should make Bodie comfortable enough that we get a break from anticipated interventions for a good while).

That moment of exhalation should have come tonight. But if you are Facebook friends with me, you know it's not coming for another 2 1/2 weeks. :-( We got the call today and our new surgery date is Thursday, August 15th. That was the first available date that both Bodie's surgeon and the Electrophysiologist were available.

Warning - pity party full steam ahead. I'm sad. I'm frustrated. I want to throw something and just sit and cry. Actually, I did (cry, not throw something) - I may have said something like "You CAN'T do this to us!" in between sobs to the kind scheduler who clearly drew the short straw and had to call me with the news. 

I just want to be PAST this surgery and focusing on recovery. It's hard for me to see friends of ours who had their surgeries scheduled after our initial surgery date recovering and going home, no longer having surgery looming over their heads. We planned for surgery to be mid-July (and then end of July) for a reason. Because it fit best into our schedule. It would give us time to get Sierra squared away and give Bodie enough time to recover before going back to preschool in September. My in-laws drove to town from Reno to help with Sierra. My best friend Val flew out all the way from South Carolina to help me. Dusk and I had both given our work notices and had the next 2 weeks off. So right now, we have a very full house when we don't need it. It's fun, don't get me wrong, but not what we planned, that's all! By August 15th, my in-laws and Valerie will have gone back home and Dusk will be into crunch time at work. Poor Bodie will have been in isolation for over a month. It stinks. We'll be without help for Sierra. And Bodie will now have to miss the entire first month of preschool with a new teacher (sternal precautions will keep him out for 6 weeks post-op). It sucks all the way around.

This is no one's fault and I get that. It's not the surgeon's fault, who I am certain did not want a family emergency so urgent that he had to cancel surgeries to attend to it. I can only imagine an event of that magnitude and would ask you to keep him and his family in your prayers. It's not Bodie's Electrophysiologist's fault who bent over backwards to get everything scheduled for the 1st day he was back from vacation only to walk into a hailstorm of craptastic events. It just happened. Things just happen. But even so, it's frustrating. The parent in me just wants to stomp my foot and complain about how unfair it is. 

But I am SO grateful that we KNOW God is in control, that we can be rest assured that He knew this was going to happen this way. I cannot help but wish He had given me a little more notice so that I could have planned accordingly, but that apparently wasn't in the cards. Clearly a lesson in patience for me (if you know me, you know that patience is SO not my strong suit). But I am so incredibly grateful for His promises to provide for our family and for our son. Because of that, I know my pity party will be over when I wake up tomorrow morning. I know I'll be able to shrug it off and roll with the punches, because He has something better in store. Obviously, Bodie's surgery date was never supposed to be July 15, or July 29 or even August 1. Let's all hope for August 15. Pretty please? 

And, in the meantime, I'm going to try to enjoy a little more downtime with my favorite little dude.


Friday, July 26, 2013

Pre Op: the Good, the Bad, and the "are you friggin kidding me?"

We were up at CHLA this morning for Bodie's pre-op stuff. It was a long, emotionally draining morning. But at least it's behind us! 

The Good
Bodie was such a champ - he handled everything pretty well (except for the blood draw, but even that wasn't too bad by kid standards). He was SO excited to be there and our favorite front desk guy (who still remembers us from Bodie's ridiculously long Norwood stay) even gave Sparky a visitor pass!
We had a thorough nurse exam with the CT nurse where she took vitals (sats of 74 - can you say "time to get this Fontan on the road, peeps"?) and a thorough medical history. We also talked about what to expect, most of which I already knew - but the fact that they expect surgery to take longer was a surprise to me. I mean, I expected it to take longer because of the scar tissue he had accumulated during his previous 3 OHS's, but for some reason it didn't click until today just how much longer it will make surgery. She told me to expect at least 5-6 hours. 5-6 hours?!? Geez - his Norwood didn't even take that long (of course, the actual surgery and bypass part should be pretty short, but it may take hours to cut through the scar tissue)! And he likely won't be first on the schedule, which means they might not even start until 10 or 11. Talk about a long day! Let's all pray things move faster!!!

He also had a chest x-ray, which he did awesome for and met with Child Life for a bit. The kids had a great time playing with the dollies. Bodie went straight for the pulxe ox probe - pretty cute to see him checking the doll's sats.

We brought Sierra along and I'm so glad. I think it was good for her to be a part of the process. Bodie sure loved having his best friend there!

We also got to see several friends giving blood and platelets for Bodie!!
Chris and Shannen drove all the way from OC to give blood and platelets - THANK YOU!
And fellow heart mama Christie came down from Simi Valley!

2 of my coworkers came to donate as well! Thank you Linda, Kathy and Lauren for taking time out of your schedule for our Bodie! And finally, Elizabeth snuck in for a 6am appointment to give blood and platelets! THANK YOU ALL SO MUCH!

And I just have to give the hugest shout out EVER to Valerie, my best friend who came with us this morning. She helped real the kids in, made sure everyone was doing ok and made everything so much smoother than it would have been otherwise. Thank you Val!

The Bad
It took 3 tries to get all the blood Bodie needed. The first attempt in his hand went south when he reached over and pulled it out mid blood draw. Yikes. The guy left and got someone else. Guess he realized what a stinker he was dealing with! They finally got a second spot in his left arm, but only got a couple of vials out before it stopped. So then they finished off with his right arm. Poor kid has gauze on both arms now! But sure glad it's over!

The "Are you Friggin Kidding me"
Yeah. The part I didn't want to have to get to. As we're about to leave after an emotional morning, I get a call from the surgeon's office. Bodie's surgeon has a family emergency and won't be in on Monday. Seriously. They are attempting to bump us to Thursday. BUT Bodie's surgeon wants his electrophsyiologist (EP) in the OR for the ablation. And the EP is out of the country until Sunday night. Which means we won't even know if Thursday works for his schedule until Monday morning. Sigh. Our surgeon only operates at CHLA on Mondays and Thursdays. Which means, if we don't get Thursday, we're looking at at least another week. Ugh. 

The good news is that blood and platelet donations given this week will still be good for surgery next Thursday and we will NOT have to the pre-op workup again.

We know this is all in God's hands. We know He has a perfect surgery date for Bodie. We know He is watching out for Bodie and this is ALL a part of His plan. And maybe if I keep repeating this, I'll actually believe it. Ok, I do believe it - but it's taking some time to process this change in plans. And we all know how great I am with change (again, why has no one invented a sarcasm font yet???)

1. Please pray that next Thursday works for both Bodie's surgeon and his EP.
2. Please pray that we can keep Bodie healthy until then.
3. Please pray that my anxiety can be kept at bay until then.



Monday, July 22, 2013

I choose peace...

One week from today, we will be handing our baby boy over for his 4th open-heart surgery. God willing, at this time next week, we will be breathing a sigh of relief, moving from anticipation into recovery. 

For some reason, crossing the one week out mark changes things. It feels so much more real now, so much closer to crunch time.

It would be so easy...
So easy to choose fear.
So easy to allow the anxiety to creep in, to take over. As I told Dusk today, I'm pretty sure my anxiety is so far off the charts it's found its way to someone else's chart!
So easy to fixate on everything that can go wrong, and that list, as any heart mom will tell you, is a mighty long one, my friends.
So easy to forget how far our miracle boy has come. easy to dwell on the sadness and the fears...

But this week, instead, I will choose better...
I choose PEACE, the peace that surpasses all understanding.
I choose FAITH that my God, who knows the number of beautiful blonde hairs on my son's head and provides for the tiniest of sparrows, will meet my son's every need in that OR.
I choose TO STAND FIRM in the promises of my God, that He will sit beside Dusk and I in that waiting room, and will calm our anxious hearts.
I choose to CAST MY CARES at His feet and ask him to take my worries from me.
I choose JOY, to follow my son's lead and enjoy every minute we have together, living life to the fullest, praising God and thanking Him for his provision for our son for the past 4 years.

This week, I choose better. 

It's been a long time since we've had to do this, this trusting in God for the absolutely unthinkable (it's been almost 3 years since Bodie's last surgery). We're a little out of practice. Please be in prayer for our family this week, that Dusk and I can stay in the space of choosing peace and not fear.


Friday, July 19, 2013


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.
And Bodie has definitely jumped in on the action:
(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 the kids have been riding their bikes SO SO much! I am loving the quintessential summer pics...
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...

1. Scheduling. 
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. 

3. Peace
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.

Friday, July 12, 2013

How can I help?

So...I've been putting off writing this blogpost, because that would mean we're getting down to crunch time, that would mean this surgery is really happening in 17 days (but you know, who's counting?). But, I'm realizing we're getting close and people are wanting to help, so I wanted to let you know how you can best help us.

Pray, pray, pray.
Seriously. This is the #1 thing you can do for us. If you haven't talked to God in a while (or heck, ever), this is a GREAT time to start. And if you've been praying your whole life, why not take it up a step and pray with a group, add Bodie to a prayer list (or 2 or 10???), or fast so that you can focus on praying for Bodie?

Specific things we'll need prayer for include: 
(1) Bodie to remain healthy until the Fontan. 
(2) Bodie's EAT to get a little more under control so that it doesn't present any problems with the Fontan (he has been in EAT pretty much all day every day since we left for Tahoe - since his rates are low, no one is particularly worried or thinks it presents much of a risk from a surgical perspective, but as his mother, it makes me nervous - it would be super if it would go away on its own). 
(4) No unforeseen scheduling situations arise causing us to be bumped (one of our heart friends was on deck for his Fontan next week and just got rescheduled for late August due to critical babies needing the ICU space, so it can definitely happen). 
(5) That Bodie will have no major complications. 
(6) That Bodie will come back extubated and we'll be able to manage his post-op pain effectively. 
(7) That his body will adjust to the new circulation quickly, so that our hospital stay isn't too long. 
(8) That being in the hospital for an extended amount of time won't crush Bodie's silly and wonderful spirit. From what we've seen with our many other friends who've Fontanned lately, it's VERY common for kids to become withdrawn during the Fontan stay and pretty much "check out" emotionally. It breaks my heart to think of that happening to Bodie, but I know it's very likely. Please pray that he bounces back and we start seeing his smiles and silly personality return quickly. 
(9) For peace for Sierra, who is too young to really understand how critical this surgery is, and loves her brother SO SO much.

(10) For peace, patience and strength for Dusk and I, as we sit bedside and try to support Bodie as best as we can. 

So yes, LOTS to pray for. We Covet prayer right now.

Give Blood.
Bodie will likely need blood product during or after surgery. We would love for that to come from directed donors (people we know personally). Because Bodie is A+, he is compatible with the four most common blood types (A+, A-, O+, O-). YOU CAN DONATE BLOOD IF YOU ARE EITHER A OR O. 

Platelets will also be an important part of Bodie's surgery. Platelets will help control the loss of blood which will ensure the surgery will go smoothly. The difference between giving blood and giving blood along with platelets is time. The whole process should take 1-2 hours. ANY BLOOD TYPE CAN DONATE PLATELETS.

Blood donations must be done at CHLA on July 24th, 25th or 26th. Donors must weigh more than 110lbs, not have left the country in the past year and not have gotten any tattoos or body piercings in the past year.  Some medications could disqualify a donor as well. Donors can not take pain relievers 48 hours before giving blood. No antibiotics 72 hours before giving blood. For platelets it is important to avoid any kind of aspirin.

To donate blood at CHLA (or to find out whether you are an eligible donor), call the blood center at 323-361-2370, and let them know you'd like to donate for Bodie's surgery on July 29th.

Even if you don't live locally (or can't make it to CHLA on the days specified, PLEASE give at your local Red Cross or Children's Hospital - there is always a shortage of blood and donors are desperately needed). 

Help us fill Bodie's Treasure Box
We will be creating a "Treasure Box" for Bodie with all sorts of little goodies for him to open whenever he has any sort of procedure (blood draw, gross meds, chest tube removal, dressing changes, etc. - all the non-fun stuff). We'd love to have some of Bodie's fans help us fill this box! I'm hoping to fill it with lots of Bodie's favorite things - small Veggie Tales items, matchbox cars, little puzzles, tiny balls, little trains, small paint sets, coloring books, etc. I'm also looking for anything that will make Bodie work on inflating his lungs (Fontan recovery is all about the body managing fluid and new circulation - so we'd appreciate anything good for getting those lungs moving to get that yucky fluid moving around and out of his body post-Fontan) - whistles, bubbles, musical instruments, etc. He also LOVES singing cards, so any kind of singing card would be AWESOME (and yes, I know they all seem to be Happy Birthday cards - that's totally cool, he won't know the difference)! 

For those of you who know Sierra, we'd love to include a few things for her as well, so that she doesn't get lost in the shuffle of Bodie having such critical surgery. Her favorite things are anything Disney princess or Fancy Nancy (especially books, coloring books, stamps, crafty things, etc.) - even just a card would mean so much to her!

If you'd like to contribute to Bodie's treasure box (or Sierra's items) and do not have our address, you can email me here at the blog and I'll give you an address to send items to. 

Bring us Meals
My best friend Val and Grandma Jan and Popo Alan will all be here the week of surgery to help us out and to help with Sierra, but after that, I can pretty much guarantee we'll have a meal sign-up. If you'd like to be included, please let me know and we'll make sure the email goes out to you! Life will be a little tough when Bodie comes home from the hospital, since he'll likely be fairly weak and needing extra attention, not to mention that we'll have to keep him away from large crowds for a couple of weeks - it won't be quite so easy for me to run out to go to the grocery store to get stuff for meals. And, if his admission ends up being prolonged, we'll need meals even more. So we'd LOVE the help, trust me! (And even if you don't cook, that's ok - we love takeout. ;-))

Visit Us
We've had a number of people ask me whether we'd like visitors in the hospital and the answer is absolutely YES. I don't plan on leaving Bodie's side (at least for the first week), so I'm sure I especially will welcome visitors - and, assuming Bodie is up for visitors (i.e. stable and not sedated), I'm sure visitors would do him wonders as well. So, if you'd like to visit us while we're inpatient and you haven't already told me, please make sure to let me know and I'll let you know when we're ready for visitors!

So, there you have it - PRAY, give blood, send goodies, buy us food and visit us! Or, you know, just PRAY. Either way, we'll be super grateful! 


Sunday, July 7, 2013

Tahoe 2013...the one where we made lemonade from lemons

As I mentioned yesterday, our Tahoe trip was full of scary moments. But, like we always do, we tried to focus on the good and were able to have some pretty incredible family moments in between the scary ones! 

We spent lots of time snuggling and goofing off with Grandma Jan and Popo Alan
We ate ice cream at our favorite place in Tahoe - 3 times!
We balanced it out with some fruit - a proud mama moment for sure, when I ordered fruit with my breakfast and the kids were climbing all over me to get to it!
We celebrated the 4th of July and saw fireworks.
We played at the beach...a lot.
We were just SO darn cute!
We went to the Children's Museum. 
(and, for the record, whoever thought having a children's hospital room with medical supplies was a good idea, it's not. It's just not. Bodie was smart enough to steer clear of the room, but Sierra was in it most of the time - I had to overcome my urge to vomit everytime I walked in there to play with her!)
We played at the park.
Sierra had a special date with Daddy and Popo!
We capped off our vacation with a final bbq on the beach...
and by losing our 2nd tooth!!!
Whew! What a vacation! Although Dusk and I will pretty much remember it as a ridiculously scary and stressful vacation, we're super hopeful that these 2 littles will just remember it as another super fun family vacation!

One final pic on our way out of town, at the sign for the town Bodie was named after. My favorite part of the pic? Bodie is holding a postcard for the town of Bodie in his hand as well. :-)