Tuesday, October 29, 2013

Infectious much?!?

A certain little somebody got cleared from Infectious Diseases on Monday. 
Well, "cleared" might not be the best term. The actual words were something to the effect of 

"well, you know I can't promise you that it won't come back. But we have to stop the antibiotics someday. So, I think it's time to stop them and hope it doesn't come back." 

Super inspiring, right? When I mentioned to the doc that I was hoping for a more "It's all gone! You're good to go!" speech, he started laughing and said "No, wait! This IS my "It's all gone! You're good to go!" speech. You should hear what I usually say..." So, I'm taking it as a positive thing and assuming we're good to go. :-)

Bodie was so excited at the mere thought of stopping his antibiotics that he ran into a table.
Ok, so maybe it didn't happen exactly like that, but he DID run into a table on Saturday afternoon. At full speed. I couldn't tell you why. Maybe to scare the crap outta me. Cause he kinda totally did. 

But, other than screaming like crazy when it happened, he was fine afterwards. We slapped a bandaid on it and he was running around like himself just a little bit later!
And I CAN tell you that he's super excited about his black eye. And keeps threatening to run into another table, since he's awfully sad that his eye is healing as quickly as it is. Silly boy.

And, because it's not enough to have one of us with a nasty infection at a time, Bodie decided to share. Last week, I came down with an infection on my face and in my right eye. A trip to urgent care confirmed conjunctivitis in my eye and a staph infection on my face. Fantastic. The doc sent me home with eyedrops for my eye and an ointment for my face. The next day I came down with the stomach flu. Seriously. Have I mentioned that we have really bad luck?!? When my face looked worse and my eye really stinking hurt 2 days later, I saw my Primary Care Physician who started me on oral antibiotics in addition to the ointment and the drops. 4 days in and my eyes (yes, plural - it had spread to the other eye by then) were feeling a bit better, but my face looked horrific and I had myself pretty darn convinced it was mrsa and I was going to have to be hospitalized.

So, hypothetically speaking, if I were going to be seeing a world class infectious diseases doctor anyway for my son's follow-up appointment, I would definitely ask said doctor off the record for his thoughts. And he may have told me that he thought I was likely colonized with the same type of staph as Bodie (MSSSA), which the antibiotics I was on would treat. And he may have also told me that he thought my face looked so bad because I was having a reaction to the ointment, and that, if I were his patient, he would tell me to stop the ointment since the oral antibiotics would give me enough coverage. But, this is all hypothetical, since we all know a pediatric ID doctor couldn't actually give me medical advice. 

The good news is, after stopping the ointment, my face is already starting to look better! Yay! But, in the meantime, we'll all keep praying BIG TIME that Bodie's staph stays far, far, far away - and my infection clears up for good! 
One of my favorite pictures E.V.E.R. You could almost believe Bodie is a sweet, innocent kid from this picture!

We also got a surprise visit from Uncle Paul this week! We love you Uncle Paul!
We're all hopeful we shared only our love with Uncle Paul, and none of our germs!

Happy almost Halloween!

Friday, October 25, 2013

The Heart's not the only thing that's healing.

9 weeks ago today...we were here. Bodie was so upset by his scars that he wouldn't even let me bathe him with the lights on. He could cry when he looked at them. He was so ashamed. My heart was breaking for him.

Today, when I picked him up from school, he was surrounded by his little friends. Apparently, he was showing off his scars to them

Seriously. A bunch of 3 and 4 years old standing around staring at my son's scar marked chest.

When I asked him why he did that, he looked at me incredulously and said "Mama, because they haven't seen my scars yet!"
Well, duh.

I think this gives a whole new meaning to the concept that scars are cool. The upside is that at least he's not ashamed anymore. The downside is, his buddies are going to be having some interesting conversations with their parents over dinner tonight. Thank goodness it's almost Halloween, so at least his timing is good.

Man, this kid has come a long way. 

He still has a lot of blue days mixed in with nice pink days and he's still not quite where we'd like him to be post-Fontan, but for today, I'm calling this a victory. Praise.The.Lord.


Tuesday, October 22, 2013

Good things come to those who wait

Today, Bodie went back to preschool, for the first time since before his pre-Fontan cath. For the first time since May, actually. 
It is hard to put into words what this picture represents; the sheer volume of prayers, hopes and dreams, the sleepless nights, the time spent on bended knee praying for this little boy, the days spent in hospital rooms, the countless hours spent researching doctors and procedures. 

And now, for the first time in his life, Bodie  is back at school without open-heart surgery on the horizon. And in a wonderful twist of God watching out for our son, his teacher is Teacher Sasha, who was Sierra's teacher at her preschool 5 years ago. Love it when God throws little things in like that. Couldn't possibly have felt better to be leaving Bodie with a familiar face. 

Thank you for the love and prayers that have brought us to this point. 

Friday, October 18, 2013

Watching and waiting

We got discharged yesterday evening! 

But not before Bodie faceplanted onto the cement floor, giving himself a nice goose egg in the middle of his forehead. Did I mention that we're on Lovenox (major, heavy duty blood thinner) injections 2x a day until Sunday night? His nurse literally started crying when she heard. She was afraid he gave himself a brain bleed. 
Tonight, he fell backwards on our bed and smacked the back of his head on my laptop. This, folks, is why we fight the hard fight against Coumadin every time. His lifestyle is just too "risky" for a longer course of Coumadin. 

So now, in addition to iv meds, I know how to distribute shots. Something else I never thought I'd learn. ;-)

Bodie's doing well, but it's too soon to know whether the stent truly helped him. Clinically he looks good. His color is great, his hands and feet are warm (new since the stent placement), his energy is fantastic and he was in a great mood all day. 
Good mood, good color.

But his sats are still hanging way low - low 70's mostly. it doesn't really make sense, to be honest. I'm not really sure what to make of it. Our pulse ox could need to be calibrated. I mean, really, it could. It's new, but even so. It's been known to give me a swing of 10 points between extremities, which doesn't even seem possible. Tonight, it told me he was satting 62, as I was looking down at very pink, very well profused toes. So, it's possible. Weirder things have happened. I have an email in to the company to get that done. 

Or it could just that he is satting that low and his body is just settling out. Bodie's cath doctor says to give him about a week to see how everything shakes out. And he had good days and bad days before the cath. So today could just be a coincidence. Way too soon to know. 

We could drive ourselves nuts trying to figure it out.

So we won't. 

Instead, we'll keep busy.

Today, we went to Hometown Buffet and giggled (and Bodie danced and danced and danced next to our table and inched his way over to the next table, getting so close and almost running into the guy sitting there and making him spill his soda, that the guy actually got up and moved to a different table. True story.) 
(Bodie thought his blue slurpee tongue was pretty stellar.)

And then we went to AWANA tonight. Bodie's first night back to Cubbies. 

The kid was SO freaking upset when I dropped him off. As in, clawing, screaming, thrashing around as I peeled him off of me and left. Separation anxiety much? When I went in an hour and a half later to give him meds, I was early and I got to watch him. He was having SO MUCH FUN (apparently, the sobfest was just for my benefit and stopped approximately 30 seconds after I left). 

At one point, I saw another kid grab his arm and kind of hang on him. Bodie, in his sweet high pitched voice, said "No, don't do that! My doctor said you can't do that!" and then proceeded to try and find his picc line (which is no longer there) to show the boy. It made me so glad to hear him stand up for himself, and to be able to do it in a way that is succinct enough that an adult could understand to help him if needed. 

When he saw me, he ran up to me, gave me a big hug, took his meds quickly and then happily ran back to his friends. 

I thought my heart was going to burst with pride and happiness at that moment.

When I put him to bed tonight, he looked up at me and said "Mommy? I LOVE Cubbies so much. I'm a Cubbie now!!!" with the sweetest blissed out smile. 

Definitely more fun than watching a pulse ox machine give questionable readings.

Please keep the prayers coming for our little man. Pray that today wasn't just a fluke, and that it's a trend toward better days ahead. Pray that his 02 sats come up. Pray that we see better numbers on the pulse ox. And pray that I don't throw the pulse ox out the window before we can get it recalibrated. 


Wednesday, October 16, 2013

Working on answers

Whew. What.a.day.
I have been trying to update the blog ALL DAY and literally have not gotten a chance until just now!

The good (short) news is that they did indeed find an intervention they could do in the cath lab. They did it and now we watch and wait, and see whether the intervention is what he needed for his body to settle down. We're now settled in a room on the CV Acute floor, for at least one night of observation due to the intervention.

Now for the long story. 

We showed up 30 minutes late this morning. What can we say? It's LA. Traffic stinks. And cop cars randomly raising down Crenshaw with their lights flashing and sirens blaring don't really help the situation any. But whatev. It's not like they were going to start without us.

Once we got into pre-op, Bodie was a dream. Literally. He was SO happy to be here, playing and goofing off. He was squealing SO loud in pre-op that Dusk had to keep asking him to use his "inside" voice. Definitely not what you expect with a kid headed to a cath. We are so blessed with this kid, I tell ya.

Since we had his picc line, they were able to give him Versed (anesthesia) through the iv instead of making him swallow the (really nasty) oral med. Unfortunately, the iv form goes in so quickly that it can cause double vision. As soon as Bodie looked at me and literally started hyperventilating and recoiling in fear, we realized he was likely seeing 2 of me. The poor kid couldn't get a handle on why there was 2 mommies and 2 daddies. He alternated between crying into my shoulder and opening up his eyes to confirm that there was really still 2 of me and recoiling from me again, until it really kicked in and then he happily snuggled with the cath nurse. 

The cath itself went pretty quick. As soon as they took him, Dusk headed out to run some errands and I headed over to Infectious Diseases to settle an issue with Bodie's meds. What can we say? We're the Bennetts and we like to multitask. ;-) We grabbed lunch, I did a few Facebook posts and then they were done. 

In a huge answer to prayer, Bodie's left pulmonary artery was pretty substantially narrowed. It should be about 8-10mm wide. His was more like 4-5mm. The narrowing existed pre-Fontan, but didn't bother him too much, so because of that, and a few other, more complex, reasons, they opted not to stent it during his Fontan. But now, because he has a rather large fenestration (5mm), and the pulmonary pressures are higher than his other pressures, if the blood has a choice, it's just going to flood the fenestration rather than work against the pulmonary pressures to push blood through the small pulmonary artery. Confused yet? Dusk and I kind of were. ;-) The long and short of it is, a large fenestration combined with a narrow pulmonary artery can cause 02 saturation issues, which it did for Bodie. The interesting thing in all of this is that his pulmonary pressures (and Fontan pressures) were all within the normal range, which means that the "pulmonary hypertension" which has been consistently blamed for all of his issues may not be as big a factor as we had thought. 

So, the cath doctor placed a stent in his pulmonary artery to widen it quite a bit, and also coiled off a small collateral vein she found. It is her hope that, as Bodie recovers (over the next few days to a week), having 2 wide pulmonary arteries to go to (as opposed to 1 wide and 1 narrow) will encourage the blood to go there, rather than out the fenestration. Her plan is to create the most perfect environment she can for blood to go where it's supposed to go and let Bodie's body do what it will.

The plan is to do another diagnostic cath in 2-3 months to see how everything looks. And very likely, sometime in the next year, we'll be having the discussion of whether or not to close his fenestration. Right now, it appears he shunts a lot of blood across his fenestration, particularly when he's in EAT. She wasn't comfortable closing the fenestration if he still needs it due to the EAT. If she did, it could potentially make him very, very sick.

The truth is, we don't know that this will solve the problem. We are extremely hopeful, but we just don't know that Bodie's body will respond the way we like. So we continue to need prayer. Please pray that widening his LPA is just what his body needs to get blood flowing where it's supposed to, rather than through his fenestration. Please pray that we can get a handle on this EAT, which continues to complicate his recovery. And please pray for his recovery from this cath.

His recovery so far has been fairly tough. He's thrown up 3 times already and his sats for the first few hours post-cath were literally all over the place. He would be satting 81 one minute and roll over and his sats would drop to the 60s. 
It's gotten much better in the last hour or two, moving into a more consistent mid-70s range. So, it's not a huge improvement over what we walked in with - YET. That is to be expected this close post-cath. Please pray that, as his body recovers, we see both his color improve and his sats increase.
Thank you for all of your encouraging emails, texts and Facebook posts - your support and love means more than we can say!

Monday, October 14, 2013

Hoping and wishing and praying

(if only it were as easy as wishing and blowing on a dandelion...)

After mulling it over, discussing every possible cause of Bodie's low sats and blueness, and praying (and praying and praying and praying) for wisdom, we have decided to move forward with sending Bodie in for a cardiac catheterization. The truth is, his sats stink and he's far more purple and winded than he should be at almost 9 weeks post-Fontan. He's not dire, but he's not in a good place. We need to do something. It's time. It's time to see what's going on.

It is absolutely incredible how quickly everything has come together since that decision was made. Procedures don't ever come together easily and quickly for us, especially caths. It took us months to schedule his pre-Fontan cath and even then, it got rescheduled. But with this one, everything fell smoothly into place. As if it was always supposed to be this week. There is NO question in our mind God orchestrated it this way. I knew it this morning, the second his cardiologist told me she agreed he should be cathed, and this immense sense of relief washed over me. And I knew it as today unfolded and openings were in place exactly when we needed them. What sweet relief, to know if nothing else that this is God's plan for this week. 

On Wednesday at 11am, Bodie is going to the cath lab. We don't know if the cath will tell us anything we don't already know. For all we know, it will show that his heart and lungs look perfect and we'll be right where we are right now, except with another procedure under his belt. But on the upside, the cath could absolutely reveal something that can be easily addressed, his sats will come up and we move on with our lives, with a much pinker boy next to us. The stakes are very very high. If we had to estimate, we'd say maybe a 50/50 chance that the cath will reveal something that can be addressed. With those odds and a very blue little boy, we have to try.  

Our best case scenario is that the cath reveals a collateral to be coiled or a narrowing to be stented, or some sort of intervention that can be done within the cath lab itself. It is possible that the cath will show something that cannot be addressed in the cath lab (for instance, it's possible his fenestration needs to be smaller, but that can only be done in the OR, via another open-heart surgery), or even that it will show no interventions needed whatsoever. If that's the case, then at least we can rule out what's NOT causing his issues. And that's never a bad thing. 

Right now, he's limping along with sats in the 70s and 80s on a good day (he typically wakes up in the mid to high 60s), with blow-by 02 at night and when needed during the day, and he's maxed out on Sildenafil. 
He's not a fan of the 02. 
The nasal canula is a non-negotiable NO.
The mask isn't much better.
Despite our best efforts to sell it as a "cool storm trooper mask."

We're not a fan of the unknown. 

So to the cath lab we go.

Please, please, please, hit your knees and be in prayer for Bodie over the next few days. Please pass along Bodie's story to prayer groups you are a part of, share his story on your Facebook page, ask for prayers wherever you can. He needs them. We need them. We're nervous. We don't know that this cath will give us answers, or that we will like the answers we get. But right now, this is our best hope. 







Thursday, October 10, 2013

Have picc...will travel

So, Bodie has a picc line. But, ya know, we're not the kind of family to sit around and do nothing just because he has a picc line. So...in the past week and a half that we've been home with the picc line...we haven't so much been "at home." With the blessing of the Infectious Diseases team, we've administered his meds, tucked it up into his shirt and went on living our lives.

We've been to the museum (pretty much Bodie's favorite place on the planet) twice.
(Bodie was showing his "best friends," the water buffalos, his picc line. He usually shows them his scars as well and tells them all about his hospital stay.)

We've gotten a haircut - MAN did this kid need it!
We've gotten slurpees. 
(When we headed into 7-11 to get slurpees, I had Sierra, her bestie Anna, and Bodie (with his iv antibiotics running and the bulb sitting in his back pocket) in tow. As we were leaving, all loaded up with slurpees, Bodie tripped and dropped his slurpee on the floormat by the door. The lid popped off and spilled a little. He of course flipped out. The owner told us to go ahead and refill it. So Sierra, in her oh so helpful way, ran back to get napkins to help clean up. As she was sprinting back to help, she, too, tripped and fell, spilling her slurpee ALL OVER the front entryway. It was at that point that they suggested we might like to use a cupholder. I'm pretty sure they were never so happy to see someone leave their store. True story.)

We've been to Hometown Buffet. Twice.
Gross, right? But what can I say? The kid loves it (even if it doesn't look like it!).

We've done a Costco run and capped it off with their amazing frozen yogurt.
We've been to and from waaaaay too many doctor's appointments - Pulmonology, Pediatrician (for flu shot) and ENT this week alone!
So, even though my last 2 posts may make it seem like we do nothing but sit down and worry about Bodie, that's not entirely true. Although, we have done a fair amount of that as well...

Speaking of the little dude, he's doing ok. His sats have been a little better the past 2 days, and his color and disposition have both been much better. It's been a nice break for him - and for us. It's way too soon to say whether it's an upwards trend vs. just an aberration, but we'll take it for now. THANK YOU for all your prayers - they've definitely helped! I've had multiple conversations with Bodie's cardiologist and at this point, we have a plan, which makes me feel MUCH better. 

We now have Bodie on 02 at night and have gone up on his Sildenafil. And now we watch and wait. We give him a week or two to see if he can hold his sats in a 75-85 range. If he can, we can continue to watch and wait and see if he can continue to increase his sats before further intervention. If he can't, and drops back down to the 60's (where he was earlier this week), then we'll be headed to the cath lab pretty quickly here to see what's going on. We have a strong suspicion that Bodie may have developed a collateral in response to higher Fontan pressures. If so, they can coil it in the cath lab and we should see his sats increase accordingly.

So, we definitely have some prayers for our little man tonight:
1. Pray for his body to make it clear which route we will take - watching and waiting, and allowing him to recover on his own OR heading to the cath lab. What we are really balancing here is the risk in going to the cath lab (not a terribly risky procedure, but it is invasive and he's still pretty fresh out from open-heart surgery, so there is definitely some degree of risk) vs. watching him potentially limp along in his recovery when the problem could be solved relatively quickly in the cath lab. So please pray for guidance.

2. Pray he can stay out of EAT. As his EAT episodes become further apart, the toll they take on his body become more apparent. He becomes angry and very easily triggered. And he doesn't eat much. Pretty much, it's not fun for anyone. It is becoming more clear that his body REALLY doesn't like being in EAT. Please pray we can have a good solution to it. 

Thank you so much for continuing to pray for our sweet boy! It means more than we can say...

Tuesday, October 8, 2013

Making it all better

Last night, I read through the voluminous medical records we obtained from Bodie's Fontan stay. I lost count of the number of times his journey was referred to as a "complicated course," or how many times he was described as "well known to the CT team." It made my heart drop to realize that, even in the world of complex heart defects, where kids are complicated just by virtue of their diagnosis, Bodie is more complicated than most. 

With cardiac defects, generally speaking, complicated is linked to poorer outcomes. No matter how much faith I have in God's plan, it is impossible for my mama's heart to lose sight of that fact. 

I'm his mom. I just want to make all of this better for him. I want him to feel better, to be able to run and do all the things he wants to do without over-exerting his little body. He has been through 5 open-heart surgeries at this point. Doesn't he deserve that? But I can't make it all better. And I hate feeling helpless. 
His sats appeared to be coming up a bit, but they dropped so low last night when he woke up that we actually put him on oxgyen, which was met with a horrendous screaming temper tantrum for over an hour in the middle of the night. 

We spent the better part of the morning today at the CHLA Pulmonology clinic, which is full of well-meaning people who, in their own words "don't really know much about complex congenital heart lesions." It was tough having a conversation about the likelihood of Bodie's low sats coming from the shunting across his fenestration vs pulmonary hypertension when it's clear the doctor doesn't know much about either. 

I walked into our appointment this morning so hoping for answers...and walked away with a big disconcerting NONE. What we do know is that cardiology says his issues aren't heart related so must be pulmonary in nature, pulmonology says his issues aren't lung related so must be cardiac in nature. Which leaves us with pulmonary hypertension. CHLA has a PH clinic! Say wha? Why are we just now learning this? Yay! Oh, but no - if we're lucky, we'll get in in maybe 2 months. Seriously?!?!? How is that even possible? I know they're busy and kids don't get referred to them unless they're really sick, but even so, Bodie can't wait 2 months for us to get to the bottom of it. We're hoping and praying they can squeeze us in sooner.

In other news, they're recommending a sleep study. To be honest, Bodie has always satted higher at night, so we're on the fence about even doing a sleep study (to determine how he's satting during sleep), but it apparently is Pulmonary's next go-to step, so they're asking us to consider it. It sounds like they would also like to do a cath, to see what exactly is going on and how the lungs respond to various interventions, to know how best to treat him post-cath. But that decision has to be made by the Pulmonary Hypertension team. Back to trying to get in to see them. 

Oh, and they want us to consider putting him on oxygen to bring his sats up. We've already discussed this with Bodie's cardiologist and would prefer to hold off doing that right now, since he is such an active little dude and it would be a major lifestyle change. So we may be compromising and watching him, possibly putting it on overnight just to help him out. 

So...we walked away with just as many questions as we walked in with...and a referral to the PH team. To say we're frustrated and worried is a massive understatement. 

Please join us in praying for our little guy.
1. Pray that we can get his fast heartrate under control again, that his heart can rest.
2. Pray that his lungs settle down, and his sats come up. It happened post-Glenn and we firmly believe it can happen again post-Fontan. But we need to see SOME forward improvement, to know that his lungs are starting to settle down. Right now we're just not seeing much and that's what's making this so hard. PLEASE pray we see improvement soon!
3. Pray that we can get into the Pulmonary Hypertension clinic SOON and that they have answers for us.
4. Pray for wisdom for Dusk and I, to know when and how best to intervene to get the best care for our son, and to know what that care looks like.
5. Pray for our whole family - for Dusk and I and the stress this has brought into our household, and for sweet Sierra, who often gets put to the side when Bodie's medical issues come to the forefront.

Thank you, as always for loving our family and holding us up in prayer!


Friday, October 4, 2013

The one where Amy whines a little (or a lot)...

2013 has been a rough year for the Bennetts...and we still have 3 months to go!

Let's recap. 

In February, a few days before Bodie's birthday, our house was broken into, with the kids and I coming home to a complete sense of violation.  March brought Dusk's first hip replacement surgery. I say "first," because we know he'll be having his other hip replaced by the end of this year, likely right before Christmas. 

May and June brought sicknesses and a rescheduled cath, along with what seemed to be a successful, but was ultimately an unsuccesful ablation of Bodie's arythmias.

July brought a very scary Tahoe trip.
August brought not one, but two, open chest surgeries for our sweet boy.
September brought another week in the hospital with an infection.
So far, October is starting out with a picc line and a scary cardiology appointment.

Does anybody need a drink besides me? 

Anyway, I'm getting to my point. My point is that we are spent. Completely and totally exhausted. We just don't have the reserves to manage much else at this point. So, when I see Bodie not recovering as easily and nicely from his Fontan as most of our Fontanning buddies, I get a little jealous. And maybe I fixate on it and make a bigger deal out of it than it should be, just because mentally I'm not completely in the game.

And maybe I'm a little tired of the following schedule: 
6am: Take IV antibiotics out of the fridge.
7:30am: Give Aspirin, Atenelol, Enalapril, Lasix and Sildenafil (all pills he swallows) and Propranolol (a liquid suspension).
8am: Administer IV antibiotics.
10am: Give Revampin (liquid antibiotics).
1:30pm: Take IV antibiotics out of the fridge. Also, give Sildenafil.
3:30pm: Administer IV antibiotics.
7:30pm: Give Atenelol, Enalapril, Sildenafil, Singulair and Propranolol.
8:30pm: Take IV antibiotics out of the fridge.
10pm: Give Revampin.
10:30pm: Administer IV antibiotics.
11:30pm: Give Sildenafil.

The IV antibiotics themselves aren't that tough (I mean, it's not like I'm dismantling a bomb - I'm just pushing meds through a syringe). But, on top of everything else, it's A LOT.

So, when I hear of our Fontanning buddies being down to aspirin only, I may want to cry a little. And when I hear of them satting in the 90's, I may want to cry a lot. And sometimes I do.

Bodie is doing ok. Just ok. Not great. Emotionally, he's happy as a clam and loving life. And we are so grateful for that. But physiologically, he's just not there yet. Certainly not nearly as well as most of our friends. Frankly, his sats are nowhere near where we would like them to be or where they should be. He's still frequently blue and winded. Yesterday and this morning he found himself in another EAT episode followed by a pulmonary hypertension attack and was satting in the high 60's and low 70's again. I was completely and totally deflated and our awesome cardiologist was able to squeeze us in today to see us.

The good news is that his issues don't appear to be cardiac. His function is great and he doesn't have any fluid buildup. Which means his heart likes the Fontan, which is good. And it leaves our most likely culprit to be his lungs. It's a bit confusing since his pressures going into the Fontan were great. But it's possible his lungs just really didn't like being messed with and they're letting us know in no uncertain terms. And for the Fontan to work well, you have to have happy, compliant lungs, which Bodie definitely doesn't have at the moment.

So...we're going to change things up a bit. It's not clear whether the problem is vasculature or airway in nature. So we're hitting it from both ends. We're going up on his Sildenafil to hit the vasculature angle (pulmonary hypertension) and restarting Xopenex treatments to hit the airway. Please pray with us that his body will be responsive and his lungs can start to relax.

We're worried about Bodie. Worried enough that we now have 02 at home in case we need it. Man, it just feels like such a huge deflating step backwards. We took a blue and winded boy into surgery, expecting to get a rosy pink, full of breath little boy back. And instead, we got an equally blue and winded boy back, except that now his blue and winded body is trying to recover from open-heart surgery. It stinks.

It's so hard not to compare Bodie to his Fontanning buddies who, even those who had complications post-op are doing awesome now, all pink and rosy and running around like typical kids. But then, as my mom reminded me earlier today, Bodie isn't like the other kids he Fontanned with this summer. Truly, he isn't.

I know a lot of kids who have had a ton of complications early on, like Bodie. And I know a ton of kids who are doing awesome now, like Bodie was pre-Fontan. But those two populations generally don't have much cross over. I don't know any kid who has had as many complications as Bodie did doing as well as he is. To be completely and totally honest, that's because very few kids who had the kind of complications Bodie had survived to make it to the Fontan.

I'll let that sink in for a minute.

So, perhaps our expectations are too high. Perhaps it's not fair to expect a child 
with pulmonary hypertension,
and known major unexplained rhythm issues, 
and a history of c-diff, paraflu and MRSA, 
who spent almost his entire first 5 months of life inpatient, 
who had not just the Norwood and Glenn (like his fellow Fontanning buddies), but also a shunt revision and pacemaker placement in between,
who had 2 open-chest surgeries in 4 days and is only 7 weeks out from that last surgery,
who is recovering from a staph infection, and
who is on IV and oral antibiotics

to recover at the speed of light and be satting really well and doing fantastic already. But, as his mom, dangit if I don't want that for him. I want him to be running and not be out of breath. He deserves this, after everything he has been through.

He doesn't know any different. He's happy. He's silly. He loves life. 
But we know different. And we want more for him.

Tonight, please pray for our boy. Please pray for us to get this EAT under control. Pray for his lungs to settle down. Pray for his sats to come up. Pray for his body to adjust to the Fontan.

And please pray for Dusk and I. Pray for us to turn this worry over to God. Because it's a tough road trying to handle all the worry ourselves.  We're both exhausted and our reserves are completely depleted. We're running on empty and in desperate need of replenishment, of our family catching a break, of us having an opportunity to truly catch our breath. Please pray for us to find that, to find peace amidst the chaos, grace amidst the pain and fear. 


Tuesday, October 1, 2013

Dodging a bullet

Although Bodie and I had a great time entertaining each other during the last week,
...we were definitely ready to blow that joint, and got our opportunity today! We were officially discharged at 3:15ish (you know, just in time to get back to our house at 3:30 to meet with Home Health - anyone who lives in LA and knows where we live and how far we are from the hospital will find that humorous). We rolled in about 4:15 and I did my first training on the iv med with the Home Health Nurse. It seemed easy enough...maybe not so much at 10:30 at night, when I'm doing it all by myself! But that's ok - I'm sure it will become second nature before I know it. 

One of the surgeons remarked offhandedly that we really "dodged a bullet." Man, what a scary thought, just how serious this could have turned out. Praise God we caught it early and his team responded quickly and aggressively! 

How does Bodie feel about being home?
Yeah, he's aok with it. And so is someone else I know...
As we say in our neck of the woods "See ya, wouldn't want to be ya"...well, except for that whole picc line thing. If you don't have a picc line, we might actually want to be you tonight...

Thank you so much for the love and prayers!!!