Fontan Post Op Day 4: Restarting the Clock

I kinda feel like we should get a new clock reset, because, truly, we couldn't focus on Bodie's Fontan recovery until we were past the pacemaker surgery. Everything Fontan recovery wise (pulling lines, heavily dieuresing to lose the chest tubes, getting up and walking) was put on hold until the pacemaker was in. As it turns out, doctors and nurses don't really like rhythm issues and don't like to move forward in other areas when there are such big issues outstanding. Go figure. 

Anyway, today was definitely a step in the right direction! Bodie rocked his pacemaker surgery. Truthfully, it's a much lesser surgery than the Fontan, so everyone expected it to go off without a hitch - but, even so, it was the second time his chest was opened in 4 days, which always makes it dicier. We're so grateful with his recovery so far. 

Within 4 hours of coming back, he was drinking water and milk and playing on the iPad.

We also got to Facetime with Sierra. I couldn't manage to get a good pic of them both smiling! But they were excited to see each other - she, to know he was ok; and he, to see her new glasses!

How stinking cute is she??? 

Other than that, Bodie's been sleeping a lot this afternoon, thanks to the Morphine.

 

He literally passed out mid-Popsicle. 

I'm so glad he's getting his rest, but honestly am a little worried that I may have just bought myself another 3:45am craft session! Let's all hope this sleeping streak lasts through the night and that he's ready tomorrow morning to hit the ground running and start making some serious Fontan progress! The attending and I talked about the effusion and he's not too concerned. He said he wouldn't have put a tube in for it, but for the fact that we were going into the OR anyway so it would have been easy for them to do. He really thinks, with going up on his diuretics and losing lines and getting him up and walking, we should have no problems getting this fluid out. So, just normal Fontan stuff. Whew! What a relief!

Tonight, please thank God that surgery went so smoothly today and pray that:

1. We can start losing lines and chest tubes in the next couple of days, so that we can comfortably get Bodie up and walking.

2. That the diuretics are successful in getting the fluid out of Bodie's lungs, so that we can come down on the 02 (he's currently at 2 1/2L), his sats will come up and he will feel better.

3. That we'll all get some sleep tonight!

Pacemaker done!

We're back in Bodie's room with him and he's resting more or less comfortably (except for when he's messed with). They were able to extubate in the OR. Praise God! The pacemaker placement went well with no issues. Please pray that his body will really be able to recover from this point forward. Pray that we can start losing lines and get this kid up and moving. 

This morning's x-ray showed a small effusion on the right side. During the pacemaker surgery, they were able to locate the effusion and attempted to place a tube to drain it. However, there was too many adhesions (from prior chest tube placements) and they couldn't reach it. :-( So they just put in another mediastinal tube (more in the center) and are hoping the fluid will drain toward it. They are also going to be aggressively dieuresing him to get the fluid off. We're grateful that this could (and hopefully does) explain the lower sats, but are nervous about what will happen if the dieuresis doesn't work, since it doesn't look like we have another option. Please pray that meds alone will get that fluid off.

In true Bodie fashion, as soon as he got back, he asked for water and then told me he had to go poop. The nurse started laughing - I think that might have been a first for her as well - a kid asking to go poop so fresh out of the OR. We managed to comfort him and he fell asleep before pooping, so we've staved off the request...for now.

Praise God surgery went well! Please continue praying for healing from here on out!

Pacemaker update #2

Bodie is all done and they're closing him up! In true Amy multitasking style, I'm heading downstairs to speak at a cardiac nutrition symposium while we wait. :-)

Sent from my iPhone

Pacemaker update #1

Bodie and Joshie Doll went back for the pacemaker placement about 30 minutes ago. They expect the procedure to take about 2 hours. Please pray for everything to go smoothly!

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.

Fontan Post Op Day 2: Laughter is the best medicine

Today started out really rough and Bodie hit his lowest point so far. BUT we had some amazing visitors who brought so much fun to today that it ended up being a pretty good day after all! I continue to be so amazed by how fast he is progressing and how great he looks for being just a little over 48 hours post open-heart surgery!

Last night, after the Morphine from his chest tube removal finally wore off, he was bright eyed and bushy tailed. I heard him moving around and got up to find him sitting up in bed staring at me. I asked him what he wanted and he said "Water. And to do crafts." Um, come again? Crafts? Awesome that the morphine is out of your system and you're awake, but dude, it's 3:45AM!!! So yes, we did an impromptu craft session at 3:45am. His attention span lasted all of about 10 minutes before he fell back asleep. I wasn't so lucky. Thanks, dude. But nonetheless, it was awesome to see him be excited about something!

This morning started out pretty rocky by contrast, with Bodie having a good sobfest about wanting to just "go home." Heartbreaking. :-( Then, it seemed like he was in pain so we gave him some Tylenol. CHLA has been awesome about giving us all of his oral meds in pill form (since he swallows pills), but the Tylenol was in liquid suspension and he was MAD about having to take it. He screamed and fussed and finally passed out once it was in his system, but not before making his pacemaker go awry again (his squirming and kicking inadvertently kicked one of the pacemaker lead connections to the box loose). Which bought him 2 more days with his Arterial line. UGH. They were ready to pull his Art line, which is in his femoral artery (his groin area), but since the Art line gives more accurate reading of the heartrate and they have now decided the pacemaker isn't 100% reliable, they aren't comfortable getting rid of that Art line until after Monday's surgery.

I get it, but still a bitter pill to swallow, because it is hecka hard to walk with a femoral line in, and they won't let Bodie walk anywhere with it (he has to stay connected to the main monitor at all times). So they compromised with me and agreed to keep the Art line in, but let him walk around his room a bit over the next 2 days. As it turns out, I didn't need to worry so much. The poor kid was SO excited to get to walk across the room, made it 2 steps and his little legs collapsed. He just started crying about how he couldn't do it. I felt so bad for him. Hopefully, we'll get to try again tomorrow. 

But we did have some good, forward progress today for sure! At rounds this morning, they mentioned that his chest x-ray looked a little hazier than the day before. Given that his sats were variable overnight again, they increased his Lasix to try to combat both concerns. So far today, his sats were much more stable (and his 02 is now down to 1/2 Liter); we're praying the chest x-ray looks better tomorrow as well. 

Bodie also ate and drank more today! And he's sitting up more and more on his own, which is great to get the fluid moving. Yay! Although it's clear that he's still in a fair amount of pain, he is definitely having more and more happy moments, thankfully! 

The biggest highlight of our day today was 3 different sets of visitors, all of whom took our mind off of being stuck in the hospital - and got us LAUGHING! We had fellow heart mom, Jennifer and her hubby swing by - they brought presents for Bodie and he actually jolted upright in his bed as soon as they walked in, just because he saw their present and wanted to open it! Ha!  

Bodie also had a VERY special visitor, who apparently provided the best medicine for healing - Sierra (along with Grandma Jan & Popo Alan)!!!

Sierra was SO excited to see Bodie -

As it turned out, so was he...

For the FIRST time in his life, Bodie's lips are the same color as Sierra's! (The pic on the top was just taken a few months ago - Bodie was SO purple!)

 Me and my best girl

Finally, our fellow heart mom Michelle and heart friend Brenda stopped by to ooh and ahh over Bodie's newfound awesome pinkness. Michelle brought Bodie watermelon which he went to town over, presents for Dusk and I, and toys for Bodie that Michelle, Brenda and I had a ton of fun playing with!

Bodie with Michelle:

Bodie when I asked him to smile for a picture with Brenda:

Bodie with his beloved Brenda and Michelle:

Thank you SO MUCH to those of you who came to visit today. I cannot tell you what a boost it gave to Bodie and I, especially since today started out so rough. What a blessing it is to have each of you in our lives!

By the end of the day, this kid (and his buddies) were just plain plum tuckered out!

For tomorrow, please just pray for continued forward progress, that Bodie maintains the 02 sats they want and that we can get him to move more, eat more and poop!

Fontan Post Op Day 1: You win some, you lose some

Today was a very long day and I'm pretty darn exhausted, to put it mildly. I'm only just now getting a chance to update. 

Bodie started the day on a high note, with lots of plans for the day. But then they tried to get ahead of his pain and restlessness by increasing his Morphine...and he was totally snowed for most of the day. BUMMER. He spent a good part of the day passed out in my arms or in bed with me lying next to him. 

 But he got some sleep in, which his little body clearly needed. And I got to cuddle him and snooze a bit, which I needed, so it was all good.

As for the details, here they are:

1. 

LOSE: We didn't get him up and walking, but

WIN: He sat up several times on his own and sat in my lap for quite awhile. And told us he wanted to walk. And tried to climb out of the bed to start walking. And his chest tube drainage was very very minimal. And we had a surprise visit from fellow heart mama Sherry, who brought an awesome set of drums for Bodie. And he tried to play them, he really did - but he was so drugged that he fell asleep mid-drumming. It was totally adorable.

 

Pray that we lose his Arterial line tomorrow morning and can get him up and walking. And pray that we can get his pain under control without completely knocking him out.

2. 

LOSE: His sats were pretty variable all day, starting in the 90's and drifting down to the 70's by the mid-afternoon. They had to go back up on his 02 to 4 Liters and even that only helped marginally. High 70's and low 80's for a post-Fontan kid on 4 Liters is NOT good.

WIN: His hematacrit was a little on the low side, so they decided to help him out with a transfusion. I cannot believe the difference in his color from before to after transfusion. His cheeks are SO rosy now! He is back to satting in the low 90's and has been weaned down to 1.5 Liters of 02. Clearly it was exactly what he needed! He also got a breathing treatment of Albuterol and that seemed to help as well. 

Pray that he is able to maintain his sats as they wean his 02 down.

3.

LOSE FOR THE WIN: Lost the Epi, a chest tube (only one left and it's draining very minimally!) and the foley (the kid is now peeing like a champ!); and should be completely off Milrinone by the morning!

4. 

LOSE: Vomited. Twice. Also, after his marathon water and popcicle session earlier, he didn't drink or eat much but watermelon this morning and that came up late in the day.

WIN: I got nothing. Except that they're starting Zofran now.

Pray that the Zofran settles his tummy so that his appetite returns and he wants to eat and drink more tomorrow.

5. 

LOSE: Ugh. The rhythm stuff. We are 100% certain we'll be going in for the pacemaker replacement next week, and that it will be open-chest. Also, when they pulled his chest tube today, the external pacer stopped working for some reason (the atrial pacing wires may have been inadvertently moved around when the tube was pulled), and his underlying rate was shown to be in the 50's and junctional. Neither things are good. The pacing issue was taken care of by changing the external pacemaker setting, but, if he keeps it up, the junctional rate could be an issue and could buy him 100% dependence on the pacemaker, instead of just when he sleeps at night.

WIN: We're on the schedule for 7am Monday morning (yay! We'll be past it that much sooner!).

Pray that the junctional rhythm was just his body's response to the chest tube being pulled and that it will resolve on its own. Please also pray that the pacer continues to appropriately pace him until Monday morning and that surgery is quick and successful without complications.

6.

WIN: We got to see our favorite attending on the planet, Dr. Moromisato, who stopped by to see Bodie and say hi.

LOSE: Today is his last day before he leaves CHLA to be Chief Medical Officer at Cardon Children’s Medical Center in Phoenix. Boo for us. Yay for Phoenix.

7.

BIGGEST WIN: 

Have I mentioned that his color is FANTASTIC?

Please keep the prayers coming - he is still really recovering quite fantastically. He's just dealing with a lot of typical post-Fontan stuff. 

Please pray that he gets a great night's rest and is up and ready to tackle Fontan recovery tomorrow morning!

Fontan Recovery: Night 1. Amazing

There's a song I used for Bodie's 2nd birthday video, called "Amazing." The lyrics kept running through my mind last night as I was watching our precious little dude:

You're so amazing

You shine like the stars

You're so amazing

The beauty you are

You came blazing

Right into my heart

You're so amazing.

Because seriously, this kid is AMAZING. Everyone has been stunned by his progress so far. Nurses and doctors who remember him as an infant running into every complication in the book just come in shaking their heads in disbelief that he is powering through this Fontan recovery. In fact, when he came back from the OR, he was put in a room in front of the nurse's station. As a seasoned heart mom, I knew exactly what that meant - that he was a more critical case and they expected him to throw them a curve ball or two. But he hasn't! In fact, at 6am this morning, they moved us to a room farther away, because he didn't need to be so close to the nurse's station!

He was extubated last night at 9:30 or so and immediately said "what about the milk???" Ha - little stinker has a great memory, even sedated. :-) We weren't able to give him any liquids for 4 hours post extubation, but once that time passed, we gave him water and he hasn't looked back. He's been guzzling water and apple juice, and eating popcicles left and right with no issues, thankfully.  He is on a fluid restriction as his body adjusts to the new circulation (approximately 80% of typical intake), so we'll have to get more creative later today with how we manage that. Lots of watermelon (which doesn't count toward his intake), I imagine!

Since being extubated, he has been holding his own, satting pretty consistently in the 90's. He's still on 3.5L of oxygen, so I'm expecting his sats to drop down as we wean that (because his Fontan is fenestrated, we expect his sats to run on the lower side), but they're comfortable as long as he stays 85 or so and above.

He's been fairly restless, waking every 20-30 minutes, asking for water. Our night nurse was fantastic and let me lie in bed with him, which seemed to help with the restlessness. We're also diffusing Lavender, Balance and Citrus Bliss (both for reducing anxiety) oils in his room. His nurses have been great about accommodating that - and everyone keeps commenting on how nice our room smells. :-) We increased his Morphine a bit to help him get more comfortable and he seems to be resting better now, thankfully. 

They just finished with morning rounds, and it sounds like our plan for today will be to pull his Foley catheter, his ART line, separate his chest tubes and maybe pull one (one of his tubes is producing a fair amount of fluid but the other one isn't at all), get him up and walking and start him on solid foods. A big plan, but he seems to be ready for big things! We'll let his body decide how much it can handle. 

Please continue to pray that:

1. He is able to get up and moving without too much pain.

2. He is able to transition to solid foods without too many of the belly issues generally accompanying the Fontan.

3. We're able to manage his pain effectively.

4. His fluid doesn't increase significantly.

5. His foot, where the infiltrated line was, continues to heal.

Thank you!

Post-Fontan!

Pink fingers - for the first time in his life, his fingernails match mine!!!

The nurse today said that, were it not for the pacemaker issue, she'd be giving us high fives all the way around. Bodie is really rocking his Fontan. He is nice and pink and satting in the 90's consistently. His pressures are great and his function looks fantastic. His chest tube drainage is fairly minimal for now. He's still on the ventilator, on pressure support, and extubation is definitely on the horizon. We are officially post-Fontan (PRAISE GOD!!!) and Bodie's body seems to be liking it so far! So much to be grateful for tonight.

But we definitely have some serious prayer requests:

1. Pacemaker

When they went to remove Bodie's pacemaker leads to replace them, the surgeon found a small pus pocket on the ventricular lead. He wasn't comfortable putting a new lead on an area of potential infection, so opted instead to culture the pus, start Bodie on heavy duty antibiotics (Vancomyacin) and not to put in new leads at this time. Although the general consensus seems to be that it's not likely to be an infection, you don't want to mess around with possible infections anywhere you have a foreign substance (i.e. a pacemaker) in the body. 

What this means is that (1) Bodie does not currently have a working pacemaker. He does, however, still have the temporary leads placed during surgery, so we do have a way to pace him externally. And more importantly (2) we will be going back into the OR next week for them to replace the pacemaker and leads. Because of Bodie's single ventricle physiology, pacemaker lead replacements have to be done open chested. S.U.C.K.Y. This means that Bodie's sweet little chest will be cracked open again next week. They don't expect it to make his recovery too much longer (maybe a couple of extra days), but we're pretty bummed, to put it mildly. I may have lost it a little bit and cried all over the nurse when she told me. 

Please pray that the cultures show NO infection, that they can quickly get Bodie on the pacemaker schedule and that the pacemaker replacement goes off without a hitch.

2. Ventilator

They attempted to extubate Bodie in the OR, but he was still a little too sleepy from the meds, so they opted instead to send him back to the CTICU intubated, with the plan to slowly extubate him there. Bodie is not a fan of the vent (I hear ya on that one, buddy). As he's been waking up more, he's been crying for water and milk. It totally breaks my heart to see him like that. 

Please pray we can successfully and safely extubate Bodie tonight.

3. IV Infiltration

One of Bodie's peripheral iv's, in his foot, the one they're running Vanco through, infiltrated. This means that, instead of the med going into Bodie's veins, it's going into the surrounding tissues. It can be very scary and cause permanent damage to the tissues. I think we caught it quickly, thankfully - but it's still scary. They're following a protocol of icing and elevating the affected area, and have injected it with a substance that will bind with the chemical to help remove it. So far, it seems to be working and his leg looks much better. So thankful we caught it quickly.

Please pray that the infiltration does not have any lasting effects on his leg tissues.

Lastly, just please keep praying that Bodie's recovery goes smoothly from here on out! Thank you!

Fontan Update #3

Well, I'm looking at a pretty pink boy right now!! As far as the Fontan goes, all looks good. His function is great and his sats are good. They're working on weaning the ventilator now and are hoping to extubate tonight or tomorrow.

The pacemaker is another story. We're waiting for surgical rounds, but we may be looking at a trip back to the OR next week to replace it.

I'll update as we know more, but please keep our little guy in your prayers!!!

Sent from my iPhone

Fontan Update #2

Our nurse stopped by a bit ago to let us know that Bodie was on his way back and we'd probably see him in an hour or so. And our favorite attending stopped by to say hi and let us know Bodie looked good. We're still waiting to talk to Dr. Starnes, but we know that surgery went well and he's coming back on the ventilator. We haven't been told why yet, but we're assuming it's due to his twitchy pulmonary beds. We're not thrilled, but we somewhat expected it. Don't know the plan yet, but hoping we can extubate soon.

Please keep praying - we'll update when we know more!

Fontan update #1

We just got a call from Bodie's Electrophysiologist. The Fontan is done. They were also able to see the ablation spots and do additional burns, which is great news. That was so quick - less than an hour after getting started!

He's not off bypass yet, but his heart is beating on its own and looks good. They're starting on the pacemaker part now and we'll update when we know more. All great news so far - please keep the prayers coming!

Sent from my iPhone

Fontan is underway!

Bodie is officially undergoing his Fontan. What a morning!

Bodie was phenomenal this morning; he was in SUCH a great mood. He gave Sierra a goodbye hug and off to the hospital we went.

The whole way up to the hospital, he was jabbering excitedly about everything that was going to happen and once we got here, he was ALL smiles. In pre-op, we played volleyball (seriously, he made pre-op a BREEZE because he was having so much fun!). We were very lucky he was in such a great mood, because they didn't call us back until after 10!

 Even Joshie Doll got a matching visitor tag, ID bracelet and allergy tag!

Brenda, our most favorite adult CHDer, came to sit with us! We LOVE Brenda!

Unfortunately for us, he refused the Versed this time. It was quickly apparent that it was NOT happening. So, they let me gown up and walk him into the OR. 

I have 2 thoughts on this experience:

1. If I NEVER see the inside of a cardiac OR again, it will be too soon. That tiny bed, the lights, the equipment - it's burned forever into my mind.

2. Bodie fought the mask. Oh boy did he fight it. As he finally settled down and stopped fighting, I was hugging him, tears streaming down my face (he was facing out, so couldn't see me), telling him how much I loved him. All of the sudden, I hear him scream through the mask "I HATE YOU! I HATE YOU!"  Everyone started laughing, me included. That kid wanted to make sure we ALL understood he was not going down without a fight. It was a great tension breaker. I told him that I didn't care if he was going under anesthesia, I was NOT going to raise a disrespectful child. Haha! Thanks for the comedic relief, Bodie. Well played, Bodie, well played.

We checked into the CTICU and met our nurse. I am SO grateful it's one we had a lot when Bodie was a baby - she gave me a huge hug! What a welcoming presence for us. Now, we're hanging in the CT waiting area with Brenda and our favorite Pastor Michael.

I'll update as we get updates from the OR. In the meantime, please keep the prayers coming! We need this very critical surgery covered in prayer!

It's Fontan Time!

As hard as it is to believe, it appears that Bodie's Fontan surgery is finally upon us. We got our confirmation call from scheduling this afternoon. We are on deck at 9am tomorrow morning. We're first case of the morning for our surgeon (always a good thing), but things start a little later on Thursday mornings (I assume because they do CT conference on Thursday mornings where they discuss all scheduled surgeries). So 9am is the "early" slot. 

We have to be at the hospital at 7 to allow for time for them to do a type match of his blood (because his pre-op was about 100 years ago at this point, they have to do a more updated match). And then, we should be on our way. 

We're nervous. We're scared. We don't want to have to put our sweet, silly, larger than life towheaded little boy under anesthesia for open heart surgery for the 4th time. It's hard to explain how much life is in this little boy, and putting him through something this risky is so scary. The complications from open-heart surgery are relatively rare, but the consequences are grave and life altering: stroke, cardiac arrest and blood clots are some of the big ones. It is inexplicable what it feels like to sign a form that lists those risks for a procedure involving your 3 year old.

We really don't want to do this. We would move mountains to avoid this. But we know this is Bodie's best shot at his heart working as well as it possibly can. And we've been ready for this surgery for a long time. We've been staring this surgery in the face ever since we first heard the term Hypoplastic Left Heart Syndrome, when all I knew of this boy was his feisty kicks and rolls. As much as we don't want to scale this mountain, our desire to be over it trumps. So we'll do it. Tomorrow, we will hand him over to an anesthesiologist, who will hand him over to an incredible surgical team, to mend his heart once again.

Please pray.

Please pray ferverently.

Pray that surgery goes off without a hitch (we have known of kids to make it all the way into anesthesia pre-op before finding out surgery was canceled, so it's always a possibility).

Pray that they don't have too much difficulty getting through his scar tissue.

Pray that Dr. Starnes is able to do the repair quickly, with as little bypass time as possible.

Pray that they are able to determine, from looking at his heart surface, the best way to ablate the part of his heart causing the fast heartrates; and that they are able to do so without causing damage to other parts of his heart or lungs.

Pray that Bodie doesn't suffer any of the risks of being on bypass.

Pray that Bodie is able to be extubated in the OR (this is sort of an icing-on-the-cake prayer request; it's fine if he's not, but it'd sure be great in terms of a quicker recovery if they can extubate him quickly).

Pray that Bodie's body tolerates the Fontan physiology and his recovery is smooth; that we are able to manage his pain.

Pray for peace for Dusk, for Sierra and for me. You know that feeling like your skin is crawling and you have to get out of wherever you are? Yeah, that's what it's like in the surgical waiting area. And we'll be there for several hours tomorrow. It stinks. Please pray for God's Holy peace to transcend our pain, our fears, our misgivings. Help us to remember we are turning Bodie over to GOD's hands, not anyone else's, that NOTHING that is going to happen in the OR tomorrow will be unknown to Him.

Friends, tomorrow will be a long, scary day for us. 

Dusk and I are usually strong. But tomorrow, we will need you to intercede for us, to be on your knees asking for God's peace, for His grace, for His strength for our son and for our family. This is when you come alongside us, pick us up and carry us with your ferverent prayers.

We'll update tomorrow as we are able. Thank you, in advance, for covering Bodie, and our family, in your prayers.

Unexpected Blessings

I prayed SO HARD that we would get our planned surgery date of July 29th, and then August 1st. But God had other plans. And I'm so glad. Because He didn't answer my prayer, he gave us an expected blessing...TIME. Time to do things we couldn't have done had we kept that original surgery date.

Time to take my kiddies out for frozen yogurt.

Time to help a certain special little girl empty out her piggy bank and allowance jars and cash them in.

 (Can you even believe this adorable excitement??? I love her so much!)

Time for Grandma Jan and I to take said precious little girl to the American Girl Doll Store to use said cashed out piggy bank money.

Time to take that special little girl (and her sweet dollie, Caroline) out to lunch at the American Girl Store. SO cute!

Time to take the kids out to Palm Springs one more time, to snuggle with Gigi and Popo... 

Time to watch adorable moments like these, shared between my bestie Val and the kiddos. I am SO grateful for how much she loves my kids!

Time to soak in the sun and pool...

(I am picturing Bodie taking on the Fontan, exactly like this - totally determined and in control!)

And time to just...be...with my kiddos... 

 I am grateful for the acceptance that has come this week, for the peace that God has given me. I'm so grateful for the moments Valerie and I have been able to share, moments we wouldn't have had if we were in a tiny hospital room, trying to hold it together while helping Bodie walk through recovery. I'm so grateful for Grandma Jan & Popo Alan, who completely changed their summer plans to fly back out again in 2 weeks to help with Sierra during Bodie's surgery, and Gigi Nancy & Popo Bill, who will be taking Sierra the week after. SO incredibly grateful for the peace of mind that brings. Thank you so so so much Popo Alan, Gram Jan, Popo Bill and Gigi Nancy for your flexibility and for loving our sweet girl so much!!!

Please continue to pray for peace for our family in the next couple of weeks, that we are able to keep Bodie healthy, and that surgery goes as planned!

Until then, we're thankful for the unexpected blessing of time together!!!