Sunday, March 31, 2013

Marvelous Light

I once was fatherless,
A stranger with no hope;
 Your kindness wakened me,
Awakened me, from my sleep.
Your love it beckons deeply, 
A call to come and die.
By grace now I will come
And take this life, take your life.
Sin has lost its power,
Death has lost its sting.
From the grave you've risen
Into marvelous light I'm running,
Out of darkness, out of shame.
By the cross you are the truth,
You are the life, you are the way
My dead heart now is beating,
My deepest stains now clean.
Your breath fills up my lungs.
Now I'm free. now I'm free!
Lift my hands and spin around,
See the light that i have found. 
Oh the marvelous light
Marvelous light
Lift my hands and spin
See the light within...

The Easter Story told by the Bennett children

Marvelous Light by The Remnant

Happy Resurrection Day from the Bennett family to yours! Praise God for the indescribable gift of His son to us!

Tuesday, March 26, 2013

Making normal out of the abnormal

Bodie had a pulmonology appointment at CHLA today. As we were waiting in line to get our visitor badges, I heard someone call my name. I turned around to see a woman vaguely familiar, with her husband and young son next to her and her infant in the Ergo carrier on her back. It took me a minute to place her as my former hairstylist Lyndsay (I say "former" because she did my hair for a couple of years before going on maternity leave with her second child and never coming back, despite my repeat harassing calls to the hair salon to make her come back, puhlease!!!)

She told me her 4-year old son (we'll call him "P"), had been diagnosed with ulcerative colitis and had had 3 surgeries (the last just 2 weeks ago) and a colostomy bag for some time. She hadn't been able to come back to work because she'd been focused on caring for him. 

I looked at this sweet little kid, so full of life, and then back at Lyndsay and I saw it. I saw the look in her eyes. The determination in a mother's eyes when she has had to fight repeatedly to keep her child alive, to make her child's life better. That determination marred by utter exhaustion, the added weight on her shoulders because she has witnessed unspeakable things in her child's journey, things no parent ever dreams of happening to their child when they think of starting a family. The joy in her smile that they were just back for "a quick appointment." And I totally got it. 

I thought of the times I had sat in her chair, talking about Bodie and what he had been through. I thought of her responding, as most do, that "I couldn't imagine going through that." Sometime, in the last year, the tables had been turned. In the blink of an eye, she, too, became the mother of a medically fragile child. She had joined the club no one wants to be a part of. I was sad for the loss of normalcy she's faced. But so happy to see how well P is doing and how, like so many other moms who have traveled this path before her, she was making it fun for P, making life as "normal" as possible despite some pretty abnormal circumstances.

After Bodie's appointment, we swung through cardiology and sat with a family I had literally met over email hours before, as they awaited news of their son's Glenn surgery. We watched Bodie run around like a madman, chatting and laughing as though it's totally normal for parents to be sitting in a waiting room while their child undergoes open-heart surgery 2 floors below. 

But this, this "making normal out of the abnormal" is what we parents of medically fragile children do. This is our mission. We might be forever changed, forever assaulted by this experience of endless doctor's appointments, worries, fears, tests and hospitalizations. But, that doesn't mean our kids have to be.

This morning, as Bodie and I sat for 2 hours waiting for what amounted to a 15 minute appointment with a fellow who didn't even know what HLHS was (but who, super helpfully, knew the practice saw a lot of HLHSers), I poured my body into making it fun for my son. Because, at the end of the day, his body might be medically fragile, but his spirit isn't.
Today, I lift my hats (yes, all of them - God knows I wear a lot of 'em) off to all my fellow moms in the trenches with me. Moms laughing their way through doctor's appointments, distracting kids during vital checks, comforting sad souls, kissing booboos and holding it all together so that a trip to the hospital is just another fun day for their special kiddos. I would say "I don't know how you do it." But you don't want to hear that. You do it because that's what good parents do. So I'll just say "You rock. Your kid will thank you for it. Someday." 

Friday, March 22, 2013

Sharing our Story

I had an awesome opportunity earlier this week. Along with my close friend Sara and her HLHS warrior Townes, Bodie and I had the chance to go up to CHLA and be interviewed by ABC7 in Los Angeles about Sisters by Heart! It was really neat to take some time to reflect on our journey thus far, how Sara and I met, how Sisters by Heart formed and how far it's come in the past 2 years.

Dr. Starnes was also interviewed for the piece and we had a chance to take a picture of him with the boys!

The interview itself turned out great. It aired today on the ABC7 4:00 news!
You can access the interview here.

And for those of you who read my blog and haven't gotten involved with Sisters by Heart yet, why not? Make a donation. Contribute a care package item. Nominate a family. Or heck, just tell someone about us, so that they can tell someone and they can tell someone who knows someone we can help. See? It's that easy! Just go to Sisters by Heart and get the ball rolling!


Thursday, March 21, 2013

It's His Gift

Bodie has this amazing personality. So, ok, I know I'm not the most unbiased source of information when it comes to my offspring. But really. Sure he's a pain in the butt sometimes (ok, a lot of the time), but really, he has this unbelievably amazing, funny, adorable personality. He has this magnetic force. He just draws people in.
He has this bigger than life personality. He walks into a room and just commands attention. He bubbles over with excitement for life and it can't be contained. Others gravitate toward that spirit. I see it with complete strangers who have only just met him and want to talk to him. I see it in his teachers at his old school, who cried when he graduated from their school and light up when they see him return to visit. I see it with his new teachers, who loved him by his second day of school.  I see it with friends and family that have known him his entire life. I see it with Dusk and I, when Bodie wakes up at 11pm, insisting on climbing into bed with us. He flashes us his signature smile, starts giggling and we've already lost. We can't resist him. It's remarkable.
Last week, I was reflecting to my dear friend Valerie about Bodie's magnetic personality. Dusk and I have never been able to figure out where he gets it from. He certainly doesn't get it from me. I was very shy and reserved as a child, and Sierra seems to be a lot like I was. And, as far as we can tell, Dusk was a bit of a ham when he was older, but didn't have the over the top sweet personality Bodie has. 
And then Valerie, in her infinite wisdom just said "That's because it's God's gift to him. It's scary to be friends with a kid like Bodie, to get so close to someone who is so fragile. God gave him this magnetic personality so that he'd never have to walk this scary journey alone, so that someone would always be there with him, to care for him." 
What a brilliant thought. What a wonderful reminder that God takes care of us, and our son, in ways we never could have anticipated. What a mighty God we serve.

Tuesday, March 19, 2013

Old lady walkers and bike baskets

Today, Dusk gave this thing the old heave ho. 
(yes, my very industrious husband really did attach a GIANT blue basket to his old lady walker so that he could cart his stuff around the house. It make everything so much more fun. I tried to take a picture of him with it so you'd get the full effect, but no dice.)

He's moving on to crutches! Yay! It'll be nice to lose the walker - but it did give us some funny moments, for sure. Like, take Monday for instance. We had just left Dusk's doctor's appointment and had to walk around the corner to the pharmacy to pick up meds. As Dusk was shuffling along with this stupid walker, he was angrily talking about how much the situation sucked, how he shouldn't have to be hobbling around in a walker all because some doctor made a mistake, yadda yadda yadda. Me, being the super understanding and compassionate wife that I am told him to quit whining, that things could be so much worse and there was nothing he could do about it now but work on recovery. When he continued to whine, I told him I was going to go on ahead to the pharmacy and was going to leave him there by himself...until I took a few steps and turned around to realize he looked very much like an old crazy man, shuffling along with his walker, muttering obscenities under his breath...which means he fits right in in Santa Monica. No one would think twice. Once we realized that, we totally started cracking up. It was a perfect moment of levity! (as was 10 minutes later, when a homeless man stopped him to ask for directions and have a chat - mostly because, I'm pretty sure, he thought Dusk was one of his peeps. True story.)

Anyway, Dusk continues to trudge on in his recovery, making progress every day. Although he will tell you progress is nowhere near as fast as he'd like, in my Pollyanna world view I will tell you that he is doing MILES better than he was even a week ago. His pain is managed much better, he's getting in some pretty grueling PT sessions, the home health nurse has been discharged, and his mobility is getting better every day. No news yet on when he'll be able to return to work, but his surgeon says he's recovering pretty much as expected. (But then, his surgeon also said how beautiful and fantastic Dusk's very Frankensteinish incision site looks, which, we're pretty sure, was just his way of doing a little CYA - but hey, whatev - there are worse places to have an ugly scar than a place covered by clothes - I mean, it may impact Dusk's ability to wear a thong bikini, but since that pretty much went out with the 1980's, I think we're cool...)

Bodie's also had quite the week, with a 2-day run of tachycardia (that his body was NOT fond of, which had mommy more than a little worried) and a Cardiology appointment where we confirmed that yes, we are indeed heading down the Fontan path and heading there soon. We're looking at his pre-Fontan cath likely next month with surgery in mid July. We'll definitely update when we know more specific details, but in the meantime, we'd really appreciate prayers for that!

Monday, March 11, 2013

The color of courage

This heart walk is crazy. It's exhilarating and beautiful. But it's also exhausting and overwhelming. And often isolating. In the midst of the craziness that this walk entails, I sometimes forget that others are watching our journey, that others are using our journey to light their path as well. Sometimes, our walk with Bodie seems so personal, so much our story that I forget that our first prayer for Bodie was always that his life would glorify God. 

And then a day like today happens. A friend stops by to bring you dinner. Oh, and she hands you a bag with "just a little something for you. The card explains it all." And you open it later and find a gorgeous red shawl inside. A prayer shawl. A gorgeous red prayer shawl (red, for Bodie's heart; and red, for courage). And the most incredible card you have ever received. A card that literally has you in tears, explaining how the shawl is a representation of so many prayers said over it, for Bodie, and for your family. 

I won't share it all here, because it is honestly so beautiful and personal it wouldn't feel right sharing it in such a public setting. But I will share one sentence in it, that really hit me - 

"You have the courage of Mary to say "yes" to God (Luke 1:58) and to welcome a child that you know is going to bring you deep heartache, and I know that God is using you to bring courage to the hearts of many other moms..."

What a wonderful gift this was. What an encouragement to keep pushing forward on this journey, no matter how scary and tiring it is at times. What a powerful reminder that our journey with Bodie has never been just about our family. It has always been about God using Bodie's journey to point others toward Him. And about bringing support and love to those traveling this path behind us. And how the other stuff is really just that - other stuff. Not so much important.

Thank you so much, my sweet friend, for this incredible gift. It means more to me than I can possibly express.

And, as an aside, I love God's perfect timing. Hours before receiving this gift, Dusk and I had literally been talking about how perhaps I'm not handling everything we have going on as well as one might hope (apparently, he doesn't like my method of continuing to be overcommitted, just letting everything hit the fan and then screaming at everyone else when things don't go according to my plan which has left no room for error - who knew?!?). So, it was a VERY well timed reminder of what's important in all the craziness; that I need to be focused on God and HIS plan for how to maneuver through this difficult time, rather than on my ideas of how to do it. And a powerful reminder that people are praying for us - because, clearly, we continue to need the prayer. 

And, in related news, we're looking for a nanny to help us out a bit until Dusk is done recovering. If anyone local thinks they might be up to the task, please shoot me an email. :-)


Saturday, March 9, 2013

Last (wo)man standing...and other sports metaphors

This week sucked. I mean really, really, really sucked. Dusk hasn't been able to get his pain under control, so hasn't been sleeping. In fact, he's been pacing the house all hours of the night. And by "pacing," I mean shuffling down the hallway with a VERY loud walker, like a little old man. And the loud shuffling is accompanied by moaning. He's been in horrible pain, which is seriously hindering his recovery. And because he's up all night, so am I. It's been SUPER awesome. 

As if that wasn't fantastic in and of itself, Sierra came down with a stomach bug on Thursday afternoon (she started with vomiting all over the floor of Walgreen's - again, SUPER awesome. The woman in line in front of me marveled at my mad vomit-catching skills and how prepared I was with both a bag and wipes in my purse. I decided to save her the whole "my son barfed every day for the first 18 months of his life - oh, and has had 3 open-heart surgeries, so nothing scares me" spiel and just thanked her nicely). So the poor kid was up all night Thursday night. Then, Bodie added to the fun by having the start of an ear infection by Friday morning. 

Although the whole week pretty much blew, Friday took the cake. Before Sierra got sick, I had planned on dropping both kids off at school and going in to work in the morning and then taking some "me" time in the afternoon to maybe get a massage or something. Ha!!! Dusk had talked to his surgeon Thursday night about his pain levels and, although the pain doc had called in another pain med to the hospital pharmacy (we hadn't picked it up yet), the surgeon wanted him to try a different med. But because it's a narcotic, he can't just call it into a pharmacy. So Friday morning, I dropped Bodie off at school. I had left Sierra home with daddy (thank God Sierra is so independent and resourceful, she was happy to watch a movie so daddy thankfully didn't have to do much, which was good since, you know, he couldn't have anyway). I then got to drive up to Beverly Hills to pick up said prescription.

I tried calling Walgreen's on the way home to see whether they carried the medication, but they couldn't tell me over the phone, since it's store policy. Say what? So, apparently, their policy is that you have to actually drive to the store (super fun in LA), haul your butt into the store, wait in line at the pharmacy window, and then wait another 10 minutes for the pharmacist to look and decide that no, they do not have that drug in stock. Thanks for the help. I made them call 3 other Walgreen's to find someone who carried it. Nobody else had it. I then tried CVS, who at least could tell me over the phone that they didn't have it, but that they could order it and would probably have it by next Wednesday. Fantastic. Dusk will probably be dead from the pain by then.

Then I get the bright idea to call the hospital pharmacy in Santa Monica, thinking they might carry it since it's a controlled substance. Good news is that they had it; bad news was that they wouldn't fill it because the prescription was coming from the surgeon and not the pain doctor and the pain doctor wouldn't be happy about that. I'm sorry but are you kidding me?!? My husband is being denied pain meds because of some doctors who can't manage to get along? It would have been fantastic if the surgeon had mentioned that tiny tidbit on Thursday evening when he spoke to Dusk, so I wouldn't have had to drive all over town only to get the original prescription that had been waiting there for us to pick up already. The long and short of it was that, after several heated discussions, I ultimately picked up the original prescription the pain doc had called in earlier in the week, with an appointment to see the pain doc on Monday. 

But wait, it gets better!!! I had hardly been home 10 minutes to check on my girl and give Dusk his new pain med when I get a call from Bodie's school that he's been crying for an hour and a half and they think he might be coming down with something. Of course, because that's how my day was going! I got to Bodie's school to find him running around, grinning from ear to ear. Stinker. I can guarantee with almost 100% certainty that he was faking it so that he could stay home with sissy. That kid is too smart for his own good, I'm telling you. But, because he definitely wasn't himself, home he went as well. 

So, by Friday afternoon, I was officially the last man standing. I will never, I mean never, again mention outloud my plans for "me" time and a massage. Ha! 

The good news is that after things hit the crescendo of crap Friday afternoon, they got much better after that. The kids took unprecedented almost 3 hour naps, so I was actually able to go into work after all. And Dusk discovered that Tylenol, alternating with his new pain med, actually works to manage his pain pretty decently, so slept last night for the first time all week. And Sierra stopped barfing and seems much better tonight. And Bodie's ear infection seems to have been vanquished after a couple days of ear drops.

And Bodie discovered Sierra's swim cap and is now insisting on wearing it in the bathtub. 
Oh, and Bodie weighed in tonight.
He has now, officially, hit his surgical goal weight of 33 pounds. He has made weight. It is on. I don't know whether to be excited or to vomit. Wait, I do know. Vomit. For sure. But I'd like to be the only one vomiting. If this stomach bug could be gone from our house, that would be awesome. Prayers for that would be very much appreciated. Oh, and for Dusk's recovery. And, apparently, my sanity. :-) 

Tuesday, March 5, 2013

Home, sweet home

The rumors are true, after an eventful morning (which included a nurse trying to discharge us with 3 prescriptions, 2 of which were for the same medication (her response when I asked her why? To shrug her shoulders and to say that's what the doctor ordered) and the third was for a medication I'd never heard of (and neither had she - she actually asked me if I knew what it was for. True story)), Dusk broke free and we are HOME!!!

I'll be honest, this hospital stay was a bit of disaster and I'm sure will involve me writing a letter to the hospital at one point soon, while the details are still fresh in my mind. For the most part, the nursing staff was very nice. But there was just no continuity of care and they were not at all on top of his medications, which could have created a very dangerous situation. Luckily, it was just annoying for us, but having to get the charge nurse involved every day isn't my idea of a good time. It was in such stark contrast to the care Bodie receives at CHLA and made me realize how very blessed we are to have such an incredible Children's Hospital so close.

Lest you think the morning was all bad, we did have some fun. Ok, Bodie had fun - Dusk and I mostly got irritated having to try to keep him out of, well, everything. Sierra wasn't there for Daddy's discharge, since she had better things to do - Mix Match Crazy Hair Day at school!
But Bodie got to come along for the ride and had a ball. He spent a good amount of time investigating the window (and, I'm sure, imagining ways to injure himself).
And snuggling in Daddy's bed with both mommy
and Daddy
And, finally, deciphering the pain chart for us
(if you can't view the video here, you can link to it here)

Bodie's take on things - Happy, Happy, Confused, Sad, Sad, Sad.
Yup, buddy, that about sums up our stay. 

But praise God we're home and now working on recovery! Please pray that Dusk's rehab goes well!

Sunday, March 3, 2013

It's getting real, y'all

We've still battling through the dance of maintaining enough pain meds on board that Dusk is fairly comfortable, but not so much that he's passed out. It's definitely an up and down battle, and those of you who are Facebook friends with me have heard my horror stories about the nursing staff here (some good, some bad and a LOT of miscommunication all the way around). 

The good news is that Dusk is eating more, so gaining more strength. And yesterday they tried to get him out of bed and didn't have any luck. But today, with a good night's sleep under his belt (brought on by some hefty doses of Dilaudid!), he was able to not just sit up at the edge of the bed, but walk across the room and back to his bed! YAY!!! It could have been the Dilaudid, it could have been the great cheering done by the PT and me. could have been the statement she made that "You know, most patients who aren't ready go to home by day 3 are sent to a Skilled Nursing Facility to finish their rehab." For the under 40 set who read the blog, that's basically an old folks home. Fun stuff, right? Totally where a 39 year old guy wants to go to recover from surgery. So, like I was saying, some combination of those 3 things convinced him to get out of bed and walk, so I'll take it. ;-) He's now back in bed, passed out, but he PT said he did 1,000x better today than yesterday, and that she wants to get him walking down the hall this afternoon. 

My mom brought the kids to the hospital yesterday, where Sierra was super excited to show Dusk and I the beautiful cards she had made for us and Bodie peppered Dusk with all sorts of questions ("Why do you have that thing (the iv) in your arm? Why do you have that (the cotton ball with tape from the iv)? Did it hurt? That (an orange tag) should NOT be on the on the pulse ox (the same one we have at home)! Let's tell the nurse! Why do you have a special potty? Are you ok?" and on and on and on. It was very cute to see how interested he was with everything and the kids had a lot of fun visiting. 

And a HUGE shout out to my mom, who has taken care of the kids ALL WEEKEND so that I could be at the hospital as much as possible! Thank you mom - we never could have done this without you!

Please keep the prayers coming for Dusk, both for pain management and that we can get him moving and out of here!

Saturday, March 2, 2013

Good night...rougher morning

Last night, Dusk had a GREAT night. They really got his pain under control and he was able to sleep comfortably. This morning is a little different situation. For whatever reason, his pain is not being well controlled this morning and he's pretty nauseas, so he's definitely having some post-op issues. We're working on finding that sweet spot of pain control again. And the next step is getting him out of bed (PT stopped by today and told him today she'll be getting him up and walking twice today). As you can imagine, Dusk is super excited about that. Please keep the prayers coming!!!

Friday, March 1, 2013

All hail the Dilaudid

Well, I had to get the charge nurse involved, but they got some Ativan on board, which Dusk responded to really well. It didn't touch the pain, but he just didn't care as much. ;-) Too bad no one suggested that this morning - oh wait, that's right, I did...whatever, I'm just glad it took the edge off. Then we finally got an internist in who could see what was going on wasn't working for Dusk. So he hit Dusk with some Dilauded (a VERY potent drug - 3-4x more potent than Morphine, but, you know, given to cardiac kids on a regular basis post-op, so one I was familiar with already). Now, Dusk is passed out. Which is exactly what his body needs. :-) 

Please keep the prayers coming for a smoother recovery from here on out.

Pain meds, what?

Let's just say I am underwhelmed by the care Dusk has received post operatively. I assume it's just a fluke and not reflective of their usual care, but unfortunately, that doesn't change that we're the recipient of the sub-standard care. 

Dusk came back to his room at 12:30ish, telling the nurses he needed pain meds. 3 hours later,  after lots of excuses (on their part) and threats (on my part), they finally showed up with Morphine. Unfortunately, by that point, we were no longer "on top" of the pain situation and Dusk had a resultant anxiety attack, which means the Morphine didn't work very effectively. Too bad the doctor didn't order any anti-anxiety meds (and this was after I explicitly asked them to make sure to give Dusk anti-anxiety meds post-op as we felt it would aid his recovery (Dusk doesn't have anxiety generally, but seriously does when it comes to medical procedures)).  So the nurses are standing around dumfounded, trying to figure out what to do and decide to increase his 02 instead. Fun times. 

After a lot of finger pointing (doctor's office is blaming the nurses; nurses are blaming the doctor's office), we finally got some Ativan ordered and are waiting to see the Internist so that Dusk gets some continuity of care. In short, we could use some serious prayers now, that we can get over this hump, get on top of Dusk's pain and get him on the road to recovery. Thank you!

From "disaster" to "beautiful"

The surgeon just came out and said surgery was A SUCCESS! He said everything went great and Dusk even had very minimal blood loss, so no transfusion should be needed (huge sigh of relief on that one - because Dusk's heart condition could result in needing a transplant someday, it's always better to avoid blood transfusions now if possible as it can limit the compatible donor pool later). In the surgeons words "Wow, we got his hip out and it was a disaster. It was squashed and misshapen and sunken in." (I can't wait to tell Dusk that little fact when he wakes up!). He will be taken to recovery shortly and then to his room about an hour after that, so it'll be awhile before I can see him. But the doctor seems to  will be very happy with his new "beautiful" hip. PRAISE GOD!!!


It's on like Donkey Kong

If you've been following our blog, you know that Dusk's hip replacement surgery is this morning. After an uneventful registration and pre-op workup, they just took him back to the OR. They're expecting 3 hours or so until I see him again, although the actual surgery shouldn't take longer than an hour or so. 

It's still early in the day, but I have to say, our experience with this hospital so far has been fantastic. All of our other surgeries have been at MUCH larger hospitals - this one is at a smaller hospital, Saint John's, in Santa Monica. The personal touch has been quite amazing; our amazingly sweet and compassionate pre-op nurse stayed in our room with us pretty much the entire time we were in pre-op (close to an hour) - we have never had that experience at any of the larger hospitals we've been at. Usually, they're running like mad between way too many patients. I don't know whether it was unusual circumstances or the norm, but we were really impressed. (Ok, I was impressed - Dusk was a little too petrified of this surgical experience to sit around and reflect on how excellent the nursing staff is. Ha!) 

We also hear that he'll have a private room during his stay here, so, the way I figure it, without a roommate, or, you know, 2 young kids trying to climb into bed with him every single night (don't judge - we've had bigger fish to fry recently), this may be the most restful sleep Dusk will get in months!

I tried to take a pic of Dusk to include with this post - you know, with the hospital gown, surgical cap and compression "stockings," but for some reason, he didn't want me to do that. Go figure. I'll just have to leave you with the visual instead.

I'll be updating here throughout the day, so make sure to check back if you want to know how surgery is going. In the meantime, we seriously covet your prayers for a successful surgery and easy recovery for Dusk. His body tends not to respond particularly well to surgical intervention, so we are nervous to say the least. Prayers are VERY much appreciated! THANK YOU!!!

(Oh, and if you're too young to get the Donkey Kong reference, consider yourself lucky! And sorry for the punchiness - I've been up since 4:30am and hopped up on coffee!)