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. 



  1. Look at that face..... a miracle from God... expect no less than miracles from this minute forward.
    Sleep well knowing this little lad is covered in Prayers and love.

  2. HUGE {{{{{{{{{{{{{{{HUG}}}}}}}}}}}}} for you my dear friend! You guys have been through so much and have watched Bodie endure a whole lot more. It is only natural for all of you to feel deflated by the setbacks post fontan. You guys just want to live in the sun with all the rest of the post fontanning families. No one person can blame you for that. I can sort of relate to what you are saying. I have moments where I get so gosh darn upset over the fact that Logan can't be "done" with his surgeries. He will never be "done" due to his specific defects. In those moments when I just want to cry or scream at how unfair it all is I stop myself and take a moment to look at my sweet boy.......and truly be thankful that I still have him with me. We both know there are so many who do not have their little ones to hold, snuggle, kiss and hug every night. It's heartbreaking.
    Bodie is a miracle. He has overcome so much in his little life and he is a survivor. I have faith that he will overcome these current hurdles and one day you will all look back on this crazy time and hopefully chuckle at the insanity of it and smile at how far you have come. Always praying for you and your family Amy.

  3. Praying for all of you, Amy! God's comfort and strength, His peace, His grace, His healing and restoration be multiplied to you all, in Jesus' name! He loves you all so much, loves Bodie even more than you can and do, lovingly fashioned him with such love and creativity! He is the God of miracles! Nothing is impossible with Him!

    I pray that God will use all of this-every challenge, every trial and heartache, even every evil formed against you-for GOOD, that Jesus will be glorified and many will draw nearer to Him-(even as so many of your friends are doing right now as they pray for you). He is able! He is the God who heals!

    God bless you!!

  4. you know what? it's ok to whine. you guys have been through a lot. and it is so deflating when things don't go the way you hoped. sending a little encouragement your way. you're totally validated to feel how you do though. you guys will move forward when you've gotten through this sort of "grieving process". xoxo

  5. Oh friend. I'm praying really hard for your own heart and schedule and rest, and for your sweet boy!