Saturday, August 31, 2013

Happy 10th anniversary!

10 years ago, we said our vows, promised to love each other in sickness and in health, in good times and bad. I think we can all agree that we've hit a fair amount of the bad and sickness a little earlier than most.
There were people who had their doubts, when we met, courted and married. People who thought we were too different to make it work (and that was without even knowing what our marriage would face!). Me the eternal optimist, who always sees the glass as half full. Dusk the eternal pessimist, who is so busy pointing out the faults in the construction of the glass that he never gets to the question of whether it's half full or half empty. As the pastor who did our premarital counseling put it "The bad news is you guys are really different. The good news is, you know exactly how different you are!" 
But here we are...10 years later. 2 homes, 2 amazing kids later. A whole lot of good to rejoice over. And a whole lot of bad that could swallow us up if we dwelled on it. And a marriage strong enough to weather the storms brought on by 5 miscarriages, an ICD placement, a hip replacement (with another one coming in the next few months), a second trimester loss with a D&C, an ear tube placement, 2 pacemaker placements, 3 open-heart surgeries and 2 more open-chest surgeries, a whole lot of hours logged in multiple hospitals...and the uncertainty of a child born with a half a heart. 

That, my friends, is the redemptive power of Jesus Christ. Taking 2 total opposites and binding them together to make them strong enough to walk a path like this, because of their mutual love of the cross. Reminding them again and again that strength lies in HIM and no one else. 
Someone put on my Facebook page that "The Bennett family is truly awe-inspiring." Dusk and I  laughed. No we're not. We are exhausted. Absolutely and utterly spent. But able to get out of bed and sing for joy because we hang on to the promise and HOPE Jesus Christ brings to our family and to our daily lives. HE is the backbone to this marriage and to this family. I can promise we would not be here without HIM. 
Happy anniversary, babe. Here's to 10 more. May they be slightly less eventful. 

Wednesday, August 28, 2013

So we're what?

Ever since we were discharged, I've had this nagging feeling that they had discharged us too early, that they were going to realize it was a fluke and readmit us. It's hard to explain, except that it felt too good to be true. But today Bodie had a cardiology appointment and it was a good great one. And I started to feel, just a little, like Bodie might do ok with this new Fontan physiology and we might just be ok. But just a little, because you know, I wouldn't want to jinx us. 

His cardiology appointment was fantastic. His heart function was better even than before the Fontan, he had NO tricuspid regurgitation and no fluid buildup whatsoever. We were able to start cutting down on meds, which is music to my ears, considering he came home from the hospital on 7 meds given at 4 different times of day! We're dropping the middle of the night dose of Sildenafil (no more setting my alarm to get up at 1:30! Hallefriggenlujah!) and going up a bit on the daytime doses to compensate. And we're dropping one of the diuretics! Yay! We go back to see Dr. Kim in 3 weeks and, assuming he's still looking good, we'll drop the 2nd diuretic and cut the 3rd in half! 

His sats haven't been great, but she's ok with that. Apparently, it's a function of him having a fenestration and adjusting to his new physiology. She fully expects his sats to come up over time, which was a relief to hear. All in all, a wonderful appointment and a huge step forward to settling into life post-Fontan. 

So now what? We're currently 2 weeks out from the Fontan and a week and a half out from the pacemaker placement. Which means we need to keep him in isolation until next week, and observe sternal precautions for 4 1/2 more weeks. We've been taking him places when we our schedule necessitated it, but haven't gone out of our way to have him be around others. It'll be fun to let him get back to the world he knows and loves.

What are sternal precautions? Essentially, Bodie's sternum has been wired shut, but still isn't fused back together. So, even though Bodie looks like his usual strong, all boy, self, he's more fragile than you think. It wouldn't take much to make that sternum separate. So, we have to be careful (and do what we can to make sure he's careful as well) during that healing process. Which means we can't pick him under the armpits for 6 weeks post-op. UGH. So how do we pick him up? We scoop him up, like a newborn baby...except that he's 33 pounds! It's a bit tough on mommy's back, for sure! But we're getting used to it. It also means he can't hang from monkey bars or climb on anything high. Which means no parks or jungle gyms. Or parties where any of that stuff is present. And no swimming or regular baths until his incision and chest tube sites have healed completely (meaning the scabs have all fallen off). Lots of restrictions for little man.

We're thrilled to be post-Fontan, but Bodie's still fragile. We had 3 of our Fontanning buddies readmitted to the hospital yesterday alone, so I am regularly reminded of just how fragile Bodie is and how the threat of readmission looms for some time post-op. We still need to be careful. And the rest of us are still in recovery from all of the emotional leadup to the Fontan. It was MUCH MUCH harder than I expected - lots of anxiety, stress and worry. Life was kind of put on hold for a good part of the summer. So, we're incredibly behind in everything at the moment. And life is full speed ahead with Bodie having at least 1 or 2 doctor's appointments a week (3 this week alone!) and Sierra going back to school next week. Life is settling back to normal, but we're still in catch-up mode and likely will be for some time. 

So, for those of you who have been helping us - by bringing dinner, babysitting the kids, sending them gifts, THANK YOU - we need it and appreciate it more than we can say! Please know that, although our life looks pretty normal at the moment, it's a facade. ;-) We need your help now every bit as much as we did when Bodie was inpatient. ;-) THANK YOU for loving us and helping us!

As you think of our family in the weeks ahead, we'd appreciate you keeping us in your prayers:
1. Pray that Bodie tolerates the diuretic wean, and we are able to get him down and off the meds.
2. We have been having incredible difficulty getting Bodie to take his meds the past few days. He is so afraid he's going to throw them up that he's now refusing to take them and gagging the second we put them in his mouth. He has always been phenomenal at swallowing meds, but he threw up a couple of times in the hospital and is completely freaked out now. We're all getting really frustrated at this point - it took 45 minutes to get him to take his meds tonight. PLEASE pray that his mind calms down and he stops being afraid of his meds. We need our easy pill taking boy back!
3. Please pray that Bodie continues to get stronger each day.

Bodie sleeping tonight. I'm not sure I'll ever get used to those pink lips!!!

Monday, August 26, 2013


Bodie was a champ today, cheering excitedly when we got to the hospital and cooperating for every part of his post-op appointment. No fear of the doctors or hospital whatsoever. Have we mentioned how much this kid amazes us?

The best part is that his x-ray looked FANTASTIC! He looks so good that, other than having us come back Friday to remove his stitches and dermabond, they're releasing us to his cardiologist for follow-up care and to start the diuretic wean! Praise God!!!
We went out for ice cream to celebrate. I was so relieved I almost cried. Bodie was so relieved he peed his pants. Literally. Damn diuretics. Guess it's a good thing I packed that bag after all.

Sent from my iPhone

Sunday, August 25, 2013

A little bit stronger...

There's a song by Sara Evans called "A Little Bit Stronger." It's a break-up song about moving on from someone, so, you know, totally not applicable to our current situation. But, everytime I've looked at Bodie the last couple of days, the refrain has run through my head -

"I'm just a little bit stronger.
A little bit, a little bit, a little bit stronger.
I get a little bit stronger."

I swear, each day, Bodie gets a little bit stronger than the day before. He's still more winded than we'd like him to be (I think we sort of secretly hoped he'd come out of the OR no longer winded), but it's probably to be expected at this stage in recovery. We expect the windedness to get better and better as he adjusts to his new physiology. His sats continue to stay in the low 80's during the day and mid to high 80's while he sleeps at night. Which is totally fine for right now. And he's PINK. So.stinking.PINK. This picture was taken at breakfast this morning - it was cold out and he said he was freezing. That would have been a recipe for some mighty purple lips a couple of weeks ago. But not today - I'm loving the pink lips!

He's eating like crazy, following me around all day saying "I'm hungry" and "I'm starving." As Dusk pointed out this morning, I'm not sure we ever heard either of those phrases come from Bodie prior to the Fontan! Yesterday morning, he had mac n' cheese for breakfast - and this morning, he had 2 bowls of shredded cheese before breakfast. And this is a kid who never ate breakfast before without a WHOLE LOT of prodding and begging. It's not unheard of for kids to eat better post-Fontan - I just didn't expect his appetite to increase THIS much. It's amazing. I'm hopeful it will keep up! 

It's a bit of a struggle to get him to drink though. Prior to the Fontan, he ate, but just enough to get by, and pretty much got most of his sustenance from whole milk mixed with chocolate pediasure. Now, he won't touch milk with a 10 foot pole - that we did not expect. Pretty much all he wants to drink these days is water. It's a bit of a concern for us, because he's on such heavy diuretics there's a real risk of dehydration if he doesn't get a lot of fluid in. He's probably drinking about 25oz of water a day, which is ok - but it'd be better if he was closer to 30oz.

Other than that, things are going well. Bodie is adjusting to being back home and is getting more comfortable with his scars. THANK YOU for all of your prayers for that! In fact, when my parents came to town yesterday, the second he saw them, he pulled up his shirt and start pointing to his scars and excitedly talking about them! I was floored. And then later yesterday, we had good friends over and Bodie stripped all the way down and ran around in a pull-up, not even caring about his scars. Praise God - clearly the prayers are helping!

Speaking of my parents, the kids had a ball with them yesterday. They dropped off some ah-mazing gift baskets from the football coaches' wives at Cal Poly - can you believe these?!? They're as big as the kids!
(these 2 baskets are just Bodie's - Sierra received a huge basket as well!)
Thank you, thank you, thank you from the bottom of our hearts for your generosity to our family! 

Tomorrow we have our CT post-op appointment and x-ray. I'd be lying if I said I wasn't concerned about the risk of readmission. I plan to have our bags packed and in the car, just in case. He's not showing signs of fluid re-accumulating (his sats are decent, his energy levels are ok, he's not puffy or showing signs of retaining fluid, he's drinking ok and eating great), but sometimes fluid can be accumulating with no outward signs. So we definitely need prayer for tomorrow's appointment to go off without a hitch, for his chest x-ray to be clear and for us to be released to Dr. Kim for follow-up care. 


Friday, August 23, 2013

Post Fontan: Unexpected Challenges

Big picture: Bodie is HOME. 2 major heart surgeries, 3 different chest tubes placed and removed, 2 cardiac lines, 3 peripheral iv's and countless meds, echos and x-rays later, he is HOME at 8 days post-op, snuggling next to me on the couch, post bath and content. This is huge and we are beyond grateful. PRAISE.THE.LORD. 

I don't want to take away from how fantastic that is (which is why this post is separate from the discharge post), but we definitely have a couple of prayer requests specifically related to Bodie's discharge.

1. Fluid.
Bodie's x-ray this morning looked a little hazy. (Yesterday's and the day before looked "fantastic.") Not to the point of an effusion, but could possibly be signaling that one is developing. The Nurse Practitioner said she wasn't quite as excited about today's x-ray as yesterday's, but that she was comfortable increasing his diuretics and sending us home to come back for post-op and an x-ray on Monday.  CHLA routinely sends Fontans home on a combination of Lasix, Aldactone and Diuril. Bodie's Duiril dose was "systemic," which I took to mean it wasn't a very big dose, just enough to make a little impact. So it was doubled to make a much bigger impact. 

Effusions and fluid build up in the chest are not at all unexpected post-Fontan. In fact, I'm pretty sure it's the most common complication from the Fontan. It just takes a while for the body to get used to the new Fontan circulation. We know many a post-Fontanner to have been discharged from the hospital only to have to be readmitted a few days to a week later due to fluid buildup. Typically, when readmitted, the hospital will hit them with heavy doses of IV dieuretics. That usually works, but when it doesn't, they have to resort to inserting a new chest tube. Not fun stuff by any means. During rounds this morning, the NP said she was totally comfortable discharging us, BUT that, if the fluid has gotten worse by Monday, we should expect to be readmitted. :-( Like I said, it's not a surprise - I think every parent discharging from the Fontan is looking over his or her shoulder, just waiting for the readmission due to fluid build-up. Nontheless, Bodie had been doing so well that we weren't really expecting this 8 days out. The good news is that his body responds really well to diuretics, so we have every reason to believe the increased Diuril will be just what he needs to get rid of that extra fluid.

Please pray that the increased dieuretics get rid of Bodie's extra fluid accumulating in his lungs, and that Monday's x-ray will show an IMPROVEMENT. Please pray we do not have to be readmitted.

2. Bodie's self image.
When I removed Bodie's leads before we were discharged today, he hardly flinched. But then, he looked down and dissolved into tears into my arms. Gut wrenching sobs. When I could finally get him to calm down enough to tell me what was wrong, he said "Mama! My chest looks yucky!!!" (I am 99% sure he thought everything on his chest would go away when the leads came off.)

He's right. It looks gnarly. And that's being nice. His incision looks pretty good, considering. But his pacemaker site was just stitched up (I'm not sure why they don't use the Derma bond to make it look pretty like the central incision - I'm sure they have some rationale) and looks pretty Frankenstein-ish. And the chest tubes? Any heart mama can tell you they're easily the worst scars of the bunch. He has 3 nasty scars from that, including a bruise around the chest tube that was in the longest. And his neck is beat up from the IJ line. And there's a rash all around, well, everything. It's just not a pretty sight. So he's right. It IS yucky. But it's heartbreaking to hear him verbalize that.

He was so upset about it that he didn't want to take a bath when we got home. I coaxed him into the bath by saying we could do it glow in the dark and he didn't need to look at his chest if he didn't want to. That worked. But he still cried when I cleaned his chest and kept splashing water on it to try and get everything off. It totally broke my heart.

I honestly wasn't prepared for this - I've heard of other kids responding this way, but Bodie has always been so proud of his scars.  This is new territory for us. I have told him that I'm not afraid of his chest, that each scar reminds me of everything he's been through, how brave he is and how God has protected him each step of the way. And that every day his chest will heal a little bit more and someday, it will look as awesome as it did a week ago. I can't wait until he believes me.

Please pray for Bodie's tender spirit to heal, to be ok with the assault on his little body in the past 8 days. Pray for increased confidence and awareness that his scars are just tangible evidence of God's protections over him. 


Fontan Post Op Day 8: Discharged!

We were told to expect a 7-10 day stay for the Fontan, barring any "major complications." I am fairly certain that a second open chest surgery 4 days after the Fontan would be considered a "major complication." Yet we are headed home on day 8!

Words cannot express how proud we are of this little man, or how grateful we are for God's protective hand over him this past week!

Thursday, August 22, 2013

Fontan Post Op Day 7: On the move

Oh my goodness, Bodie was on a MISSION today! I'm pretty sure his mission was to tire us out - and he was totally successful!

He was weaned off of oxygen by midnight last night and boy did he take advantage of being untethered today! We walked...and walked...and walked. Totally unassisted. Oh, and ran. And climbed. And stood on the counter at the nurses' station to touch the hanging stars. And said "Jump! Jump!" and was crestfallen when mommy said no jumping yet. 
We negotiated with mommy for 10 minutes about whether or not we were allowed to leave CV Acute to explore other parts of the hospital (although Bodie was quite convincing, mommy did have to put her foot down eventually, resulting in Bodie plopping himself down on the ground and saying he was just going to sit and wait for someone to open the door and then sneak out.). Silly boy!
We called Daddy early in the morning, before he got up here, to tell him all the big, important stuff that had happened since he left last night (it's too bad Dusk couldn't understand what Bodie was telling him, because I was cracking up on my end listening to Bodie excitedly telling Dusk that (i) he had a Biiiiiiig poop; (ii) he took all of his bandaids off and threw them in the trash, (iii) the alarm went off and somehow the nurse "sneaked" in and turned it off, and (iv) somehow, mommy said he "waked" up on the wrong side of the bed this morning - all totally true statements).
We had several friends come and visit us today, including awesome fellow heart mama Abigail, who thoughtfully brought Bodie a stamp set, hero mask and cape. The mask rocked.
 One of our favorite teachers, Teacher Chelsea, also came for a visit! Bodie showed her all of his Treasure Box items.
And goofed off with her (his eyes had been closed in the previous picture - this was his response when I told him to try and keep his open for the picture! Ha!)
 We also spent lots of time in the playroom, making various versions of Mr. Potato Head. 
And wandering the halls of CV Acute, making new friends, including sweet "Lion Heart" Owen and his mommy and daddy. Bodie was enthralled with the picture and asked me breathlessly "Mommy! Is there REALLY a lion in that room???" 
One last walk of the halls before dinner. Joshie Doll got to come on this walk with us. 
And our beloved Brenda. Bodie wasn't smiling in the first pic, so Brenda was trying to show him how to smile. Ha! We love you, Brenda!
We capped off the day with yummy Thai delivery and McDonald's ice cream cones. Bodie wasn't much into eating today (his stomach was really bothering him - I think it was just the process of finally getting everything moving again), but chowed down the rice and ice cream. I'd call that a perfect ending to a pretty good day.  
All snuggled into his hospital bed, watching Tangled and snuggling with his volleyball (signed by his favorite doctors, nurses and visitors). I'm still blown away by how great his color is...

Prayers for tonight include:
1. Bodie maintained his sats pretty well today. He had moments of desats and more purple coloring, particularly when walking around, but nothing as drastic as yesterday. Please pray that he maintains his sats in an acceptable range as his body adjusts to his new circulation.
2. Today's x-ray looked fantastic. We're definitely moving in the right direction. Please pray that tomorrow's looks as good.
3. This kid's skin is a total train wreck right now. Bodie has always had sensitive skin and we have many remedies that have worked in the past that we intend to try once we get home. But we've honestly never seen it this bad. Every single nurse and NP has commented on it, so I know it's not just typical "super sensitive skin." In typical Bodie fashion, he takes it to the extreme. He looks like he has been dragged through a war, particularly at his IJ site and near his chest tube sites. Which he has. But we'd love his skin to not have to show it quite so much. He's irritated and constantly scratching it. We've started applying Cortizone cream, which helps somewhat (at least he's not clawing at his skin anymore).  Please pray that we can find the right mix of creams to ease the poor kid's pain. 
4. Please pray that this kid goes to bed! He is wired right now (typical post-Fontan energy!) and this mama is tired! 

Wednesday, August 21, 2013

Fontan Post Op Day 6: Step Down!

After a nice, restful night of sleep...
(I seriously cannot believe how peacefully this kid can sleep considering everything he's had done to him in the past week!)

We moved to stepdown!!! YAY - one step closer to going home! 
(Upon his admission to the step-down unit - way more space to play with daddy!)

Lots of wonderful stuff happened with the move. Most notably, Bodie lost his remaining chest tube and oxygen, and gained a whole lot more freedom. He has now walked the halls in CV Acute multiple times and played in the cardiac playroom twice. He LOVES it! He is getting much more comfortable on his feet again and can walk without any help now, which is fantastic progress!
He got to eat somewhere besides in his bed - so excited to be untethered!
He had a chest x-ray in anticipation of his chest tube removal. This is what he did when we told him the tech was taking his picture. What a cheezer!
We also had our beloved Karin come and visit and Bodie was beyond thrilled.
Karin helped Bodie open up a lot of his treasure box items and he had a blast.
Karin also helped the nurses and me during Bodie's chest tube removal, which turned out to be a 4 person job - 1 to pull it, 1 to hold his legs down and the other 2 to calm him and deal with his arms. Exhausting stuff - thank you so much, Karin, for loving our little man enough to come over here and hang with all of us, even during the tough stuff! We love you!

After comfortably sitting in the 80's all day, in the late afternoon, Bodie's sats dropped to the 60s and stayed there. He was happily playing, but the pulse ox machine was alarming left and right. We had a steady stream of nurses in our room, checking Bodie out. It was all very reminiscent of when he was a newborn and satting all over the place, bouncing back and forth between CTICU and step-down. Not a memory I wanted to relive. To be honest, it was deflating and kind of scary to be back in "unexplained low sats" land. Needless to say, his nurses weren't too happy. It didn't take long for them to want him back on 02. 

That couldn't possibly have felt like a bigger step backwards. We had JUST taken Bodie off of it and he hadn't been using it for the last 24 hours or so (although he technically was "on" 02, the canula had been resting on the bridge of his nose, effectively oxygenating his eyeballs and that was about it - you can see in the above pictures). I cried. A lot. Bodie cried. A lot. I tried to go in the bathroom and cry in there so that Bodie wouldn't see - but I couldn't help it. When I came out and he cried "but, mommy! You said I didn't have to have this anymore!" my tears started flowing again. Not my proudest moment. But an honest one. This has been a long and scary journey - and a tough week. All I could think was "we were so close to going home! Please don't make us go home on 02!!!"

We were afraid it might be fluid re-accumulating, so he had a bedside chest x-ray. But that came back great, thankfully! So it seems our most likely culprit is his good old fashioned pulmonary hypertension, an attack likely brought on by the trauma of his chest tube removal (he was fighting MAD over that and screamed like crazy). Bodie had quite a number of pulmonary hypertension attacks post Glenn as well, so I should have been expecting this. His lungs just DON'T like to be messed with, and changing blood flow during open-heart surgery definitely qualifies as messing with them. Luckily, we had already restarted him on Sildenafil, which is the best treatment for PH attacks in Bodie. We are so hoping that the Sildenafil, combined with the 02, would bring his sats up. And they did - he's currently satting 88 on 1L of 02. 

After that late afternoon fiasco, Dusk and I were just D.O.N.E. Totally and completely emotionally drained. (For the record, the removal of the chest tube was the 3rd big procedure I'd had to hold Bodie down for in the past 3 days - it's a wonder this kid will even still look at me at this point.) So I put out an SOS on Facebook to see if someone could take care of bringing dinner to us. We just couldn't even think about it. Thank God our good buddy Dave answered the call and brought us the most amazing dinner, and stayed to play Mr. Potato Head with us for a bit - Dave, you were such an answer to prayer tonight. THANK YOU 100 times over!!!

Bodie with Dave:

Next up for tonight is to remove Bodie's IJ line (his only remaining cardiac line, in his neck) and replace it with a peripheral iv. It won't be fun -we're hoping a dose of Morphine beforehand will help to keep him calm and not trigger yet another pulmonary hypertension attack.

Beyond that, I'm not sure of our game plan.  Prior to his PH attack, I'd have said given that all of Bodie's meds are now oral and he's pooping (yay for poop!), eating and drinking fine, if we can get a clean x-ray in 24 hours, we'll be ready to spring this hospital. But, that has likely changed due to his PH attack. I don't know how much that changes the picture, to be honest. That's really up to Bodie's lungs.

So, just a few (BIG) prayer requests tonight:
1. Please pray that Bodie's lungs settle down from the PH attack, and we can get him back to room air by tomorrow. Certainly, the sooner we can get him off 02, the sooner we can think about going home.
2. Please pray that Bodie continues to take all of his meds orally, and that they work to keep the fluid off. Sometimes the oral diuretics aren't as effective as the IV meds, and fluid starts to re-accumulate. Please pray that doesn't happen with Bodie.

Thank you!


Tuesday, August 20, 2013

Fontan Post Op Day 5: Turn that frown upside down

Whew. What a day. 

It started with a morning snuggle and watching Cars and "breakfast" (don't judge - it's totally within the CHLA "low-fat diet" protocol). 

After that, it was lots of progress!!! Which made me VERY happy. I wish I could say Bodie shared my excitement. But, apparently, the painfulness of the actual procedures to remove his Arterial line (in his groin), his temporary pacemaker wires and a chest tube outweighed the awesomeness in progressing forward. He got some Morphine beforehand, but he is one dramatic little guy and let us know how unhappy he was. :-( 

We were met with lots of unhappiness and avoiding eye contact today. This kid was totally checked out. :-( We had to bring in the big guns, in the form of a scarf juggling Faith Spelbrig.
...who Bodie was thoroughly unimpressed with.
She was able to bribe him with a few ice chips... finally get a split second smile.
But, Bodie was one tough audience today. It was pretty exhausting trying to keep him engaged. 

I knew he needed a change of pace, so we tried to get him up and walking in the late morning. But he was too tired from the battle over losing his Art line to make it more than 2 steps without sagging and sobbing that he just couldn't do it. But after a nap, we decided to work with what he was giving us and take a wagon ride around the CTICU and CV Acute. As you can see, it was exactly what he needed!
Could you just die from the cuteness of this face???

 We also used the wagon ride as an encouragement for him to walk. We had him walk 5 steps to get from his bed into the wagon, 5 steps from the wagon to the 2 windows he wanted to look out (and 5 steps back each time), and then 15 steps from the door of his room to his bed. Not running yet, but seriously, BIG HUGE OLE HUNKING PROGRESS, peeps. 

Working on standing while looking out the window.
The plan for tomorrow is to lose his other chest tube (assuming the tiny effusion that showed up on this morning's x-ray is gone), lose his IJ line, walk walk walk and move to step-down! We are definitely on the forward progress train at this point! YAY!

Prayers for tonight:
1. Bodie is still on 1L of 02. It's annoying him and we'd really love to ditch it. Please pray we can wean him off of it tomorrow without his sats dropping too low.
2. Pray that his morning x-ray looks great, he continues to put out little fluid, and we can lose that last chest tube.
3. The only reason they kept his IJ line one more day is because he needed a few electrolyte replacements today. Pray that his electrolytes balance out and tomorrow morning's labs look good, so we can get that line out (it is REALLY bothering Bodie).
4. Bodie's uber sensitive skin has really taken a beating from all of the tape and tubes. Please pray we can find the right lotion to bring it back to good shape. Poor kid is all kinds of rashy everywhere.
5. Bodie hasn't pooped since the pacemaker surgery. Please pray for poop!

And I'll leave you with a sweet Bodie-ism. Tonight, as he was in his bed watching Cars 2 with Dusk in the chair next to him, I was sitting on the window bed updating the blog. 

This was our conversation - 
Bodie: MOMMY!!!
Me: Yes Bodie?
Bodie: I'm...missing something.
Me: What are you missing?
Bodie: You!

He wanted me to lie in bed with him.