Waxing Philosophical

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don't give up."

ANNE LAMOTT

I've been thinking a bit about hope lately. The nature of hope. The idea of hope. The why, what, and when of hope. When is it okay to hope? When is it foolish to hold onto it? This may turn into a bit of a ramble - but it's something I need to capture. I invite you to bear with me or don't -- this one is for me.

I'm certain hope is on my mind because 2010 has been a year of hope for our family. Hope for goodness in the unknown. Hope that we made the right decisions. Hope that tomorrow would come and the next day after that and we would all still be here to welcome it -- together.

Of course, we did not rely on hope alone. Hope is no substitute for preparation. You inform yourself, you research, you connect and confirm, and you pray. And when all that can be done is done, when all of the decisions that can be made are made, you invite hope to sit beside you and you take the journey. There is no avoiding the journey.

Hope was the fuel we relied on when we were running on empty. It filled us up and set us straight; hope offered direction and focus. Hope became the energy we took in and passed on to our family, our doctors, our children. It helped us to see beyond now to tomorrow, to better. Hope helped us create a vision we worked to realize. There is no avoiding the work.

Our every hope has not yet been realized. Our family still operates a degree or two east of normal, but we are here. Together. And in that there is hope. Our dreams and wishes and hope continue to invite possibility. Amazing, unexpected possibility.

Hope is light. And no matter how many shadows you must pass through to find the light, you walk because you have hope that it will be found. A wise and dear friend said, "Light and shadow bring depth into our being." I love that. I feel that. I aspire to understand that truth more fully. Indeed, if 2010 was a year to connect with and understand the power of hope, I walk into 2011 full of intention to invite light into every corner of my life. More light. Less shadow. I think that's how it works. And somehow I feel that although I cannot control the timing or depth of the shadows, I can control the light with which I meet them.

Vague - yes. Ethereal - probably. But that's the great thing about personal truths and growth - they are your own to ponder and understand. Your own. Embrace yours.

The Silent Treatment

Mac and Maui were made for each other.

Hey there friends! Yep, still here. Still happy. Still trying to fit it all into the day. Still falling short when it comes to maintaining our little journal of adventures here. Since Mac has become more mobile, leaving all of his tubes and troubles behind for now, we've been on the move. But today it's not about getting caught up on Halloween, or Thanksgiving, or an impromptu trip to see Mickey or Maui. I hope and plan and have committed to update over Christmas--really. But today, I need your help.

After three months of speech therapy, McKay has nothing to say. He's becoming increasingly frustrated with our communication routine (or lack thereof) and has starting hitting and biting to make his point. Not so fun.

I'm signing. I'm repeating words and short phrases at nauseum. We're watching all the language videos. Reading books. He's going to nursery where he can see and hear other kids speaking and singing. He'll start a special preschool program in January to augment his opportunities for interaction. Grandmas are on board. Aunts are on board. Babysitters are doing the same. The poor kid probably thinks you have to say everything five times to be heard. And yet, nothing.

This week our speech therapist has recommended we commit to a speech development program called The Hanen Program. Have any of you experienced this program? It's an extensive on campus education program about helping children communicate. Please say someone out there knows something about this! I need to know if this is something that will be worth our time. The time commitment is, well, a big commitment. Not so bad if I can take Mac with me after a day at the office and we get to focus on him for a few hours, but this program is just for parents. No Mac. Just mom. I can't love missing an entire night each week with my boys. I can't love that I won't be actually coaching him through the process, but sitting in a classroom discussing whether or not McKay is better or worse off than all of the other kids whose parents will be there too. Is that selfish? Am I being short sighted? Bad attitude? Seriously - tell me.

So here's the plea -have any of you experienced speech delays with your kids? Have any of you after taking a truly hard look at whether it's you that has enabled that delay and changing your ways, still been frustrated by your child's seeming disinterest in language, imitation, sign or anything that has to do with communication? What did you do?

Don't get me wrong. McKay plays, he dances, he follows some directions, he seems to understand most things we tell him, he loves, he kisses, he squeezes and problem solves. But he does not speak. He is 28 months old and has no words. And everyone seems to think that's a bad thing. A really bad thing.

Part of me wants to believe that it's okay. He'll make it up. He'll figure it out. But professionals who study this topic seem to be worried or puzzled or fascinated by it. And that gets me to worrying too.

So that's it tonight. Nothing particularly cheerful aside from the picture of Mr. Mac at his favorite fountain on our latest search for some sun. Just a mom who's been silent for a little too long searching for some answers for her son who seems perfectly content to enjoy the silence. Please, speak up. We're listening.

Dream Big

If no news is good news, I guess you can assume we’ve been living a whole lotta good news over here.

The last few months have been a breath-holding, too-good-to-be true, waiting-for-the-other-shoe to drop (but-it-didn’t) exercise in trust. Trust that the doctors did exactly what they said they did. Trust that the repairs would hold. Trust that Mac’s body would handle the changes well. Trust that we would be able to tell if anything was going wrong. Exercising that kind of trust can leave you exhausted.

But yesterday, we received confirmation --confirmation that everything is going as well for McKay on the inside as it appears to be going on the outside. The docs directed us to stop all of McKay’s post-surgery meds one week ago. They wanted to evaluate him on his own merits – no assists, no intervention. And our drugless little wonder could not have been better. Aside from a liver that seems slightly enlarged due to a change in pressures from his new plumbing, McKay received a clean bill of health yesterday.

After the exam, x-rays, and tests we did something the doctors have never done with us before-- we conferenced about the coming years, not months. We talked about the importance of social development instead of prescribed isolation. We talked about the possibility of him going years, even decades without another surgery. We even talked about signing him up for the four-year-old soccer league when the time is right. I never let myself plan, dream, or envision anything that far ahead before yesterday. Permission to dream for yourself is empowering, permission to dream for your child is transforming. It's a concept to which I'm still happily adjusting.

We're not completely out of the woods yet. Mac still has a way to go before he’s up to par developmentally. He still has no real, recognizable words. We give him generous credit for nie, nie when he wants to get into bed and I thrill each time I request a kiss and he delivers, but it's a long way from effective communication. A speech therapist now visits us three times a month and we’re working on some simple signs and animal sounds. The progress is slow, but there is progress. Just this week he has started to make a "mmm" sound when he sees a cow, seemingly trying to spit out some semblance of "moo." Progress.

Some have told me to expect a month of developmental delay for every minute they shut McKay’s system down entirely – every minute he was technically “gone.” For McKay that time totaled 29 minutes, 29 months. The child is only 26 months old. So technically, I guess we could say he’s doing better than expected. I really don’t know what to think, I only know how to feel. And I feel grateful.

I am so thankful it overwhelms me, stops me, and causes me to see everything in life in new and glorious ways. Everything. I've been given the chance to dream, to hope, to imagine futures for all of my children. All of them. And you know what they say – if you’re going to dream, dream big. Watch out big, wide world. Mac is here to stay.

Totally Two

Mr. Magic turned two last Friday.

Before the party, there was a fishy gift or two.

"Ish. Ish." It's the only word Mac says with any regularity. Now he has his own tank; just the thing to encourage his fascination with the deep sea.

His "Ish, Ish" cake was covered in special details.


Chock full of love and personality courtesy
bakers and artists Aunt Hilary and Uncle Ron.

A major monsoon brewing outside brought our picnic plans indoors. Which meant fishing for prizes over the balcony rather than in the pond.


But no matter, there was much to celebrate and everyone made the most of Plan B.



No one more than McKay. Although he's still a bit overwhelmed by crowds and very weary of anyone outside his inner circle coming within 10 feet of him, his spirit seems to be coming back. He's quicker to laugh, more willing to be held, and more inclined to share a smile than he's been in weeks.


Watching our happy boy return back to us and enjoy a celebration meant just for him, was a gift.

Truth be known, just a little more than a month ago we avoided talk about his birthday plans. Who, what, when, where? It seemed too risky to discuss. We were getting through today. Just today.

But two? Turning two meant we had an entire year to look forward to. It was a milestone that made me want to gather everyone in. I've felt very private about it. Quiet. And not at all how I expected to feel.

Starting this new chapter feels amazing and unsure. Up until now there has always been a huge surgery, a milestone to work toward and prepare for. That type of work and worry takes up thought and time. However awful, the milestones so far have been concrete, unavoidable, sure.

Now, post-fontan, at home, ready to try "normal," there is less to count on. McKay is not "fixed", but he is as well as he's ever been. He's not through with surgeries, intervention, procedures, but he's through for now. It's all ad hoc from here on out. And although it might seem strange to feel anxious in the land of better than ever, the truth is there is nothing sure to anchor to here. There is just tomorrow and the next day and the day after that. We have climbed our next mountain of sand and we will do our best to stay on top until the landscape starts changing underneath our feet again.

Our best guess is that we have about 8-10 years; a decade before things get too serious again. At least that's what it seemed with the age groups we saw in Philly. Babies. Toddlers. Pre-teens. That seemed to be the age spread as we wandered up and down the halls of the cardiac floor at CHOP.

The plan is to return to Philly every year. It will be a family trip - the brothers three for a yearly pounce into the city of brotherly love. We will visit for check-ups and check-ins. For studies and research and access to the most renowned set of post-fontan specialists in the world. McKay is now affectionately known to the heart world as a "Single Ventricle Survivor." It's a title we were not aware of until we had actually joined the club. And it's a title we will fight to keep.

As my pediatrician advised this week, "It's time to stop worrying about surviving, and turn our attention to thriving, developing and helping McKay reach his potential." Speech therapy will begin next week. This kid needs a voice. Somehow I think his lack of language to this point has been a tender mercy.

We are more than grateful. To be at home. To be surrounded by family. To be celebrating.

Happy Birthday my totally two!
You have taught us to live deeper, appreciate more and move on more quickly than we could have ever learned in a lifetime without you.

Rush for Summer

The Monday after we arrived home from our field trip to Philly, Matt said, "Look around. It's summer. We almost missed it."

It was true. Summer had a late start in Salt Lake this year and it was just beginning to warm up when we flew the coop. We sat silent as we drove past roadside vegetable stands, people in flip flops, and camping trailers clumsily making their way onto the road loaded down with a week's worth of fun.

"We're NOT going to miss this summer," Matt declared.

And so our mission to pack summer into a few short weeks began.

Because we've already had three weeks away from work and three weeks of time off is a lot of time away no matter where you've been, we've done our best to make the most of weekends for our summer fun. We caravaned the entire extended family up to Bear Lake and back, spent a late afternoon with friends at the water park, and, this weekend, we took the boys to the Green River.

The river is majestic - in absolutely every sense of the word. It rolls and tumbles and inspires deep breaths.

It's just the place for brothers to make memories with each other,

and a grandpa who will stop anything to spend time with them.
He makes them feel as special as they are.


Mac was more the beach goer than river runner this trip. He played hard. And remembered some good advice about an apple a day...


All tuckered out, McKay clutched this lucky apple for all it was worth; falling asleep in the sun, breeze, and sticky-sweet smell of fruit-drenched fingers.


Summer is a season of play. Of being together and stopping time to enjoy the sunshine. We're soaking it up. And the time together has been healing -- for all of us.

Looking Forward

Grandma called today. We've apparently gone too long between posts. I apologize. We've been preoccupied; standing in awe of the month that is now behind us. Did I just say that? Yes, the Fontan is behind us. Pinch. Pinch. Pinch. I'm still a bit reluctant to ring the victory bell, but we cannot deny the amazing grace that has attended our family in the last 30 days.

One month.
Just one month to go from this:

To this:

Off oxygen. Recovering. Trying to keep up.
The strength of his will takes my breath away.
I'm about to call act three of this beautiful nightmare complete.

This is Mac's last xray. Almost crystal clear. Almost. Just a tiny amount of fluid remains in each of his oh-so-oxygenated lungs. He's sat-ing between 88-91. And that's at Salt Lake's sky-high 4,400 feet above sea level. I still cannot quite believe it, trust it, or begin to exhale myself.

Of course, the meds continue. McKay receives 3 doses a day of diuretics and 1 aspirin. He's good at the aspirin. He's taken it everyday of his life. He opens up like a little bird and I drop in the chewable tablet as he toddles away. Easy.

The diuretics are a different story. Clenched teeth. Screaming. Tears at the mere sight of the syringes. He's learned to hold the liquid in the back of his throat and gargle it back out. We do our best, but I'm sure he only swallows about two-thirds of his dose. I dread giving it to him. But I dread the thought of going back to the hospital more. So we'll endure three more weeks of it and then put it behind us and try to forget.

Although I'm not sure forgetting is entirely in the cards.

I made the mistake of reading McKay's operating report. I remember only three horrible things from the two page blow-by-blow: Oscillating Saw, Heart-Lung Bypass - 62 minutes, Circulatory Arrest - 21 minutes. And it's those chilling phrases that make it hard for me to say "No" to chocolate covered pretzels before dinner - because they make him smile.

McKay is still very much in recovery mode. He's still napping 3-4 hours each day. He still lays down in the middle of the floor mid-play and calls a time out.
But he gets back up.
On his own.
In his own time.
The way he always has and the way, I suspect, he always will.

Just yesterday he clawed his way up two flights of stairs to his room. Last week he made just two steps before he swooned backward and let me catch his fall. Progress. It is sure and steady and remarkable.

These two crazies are fiercely protective and seem to know just what Mac needs. They have been patient beyond their years, understanding beyond expectations, and just the right medicine for a little brother who idolizes their every move.

We are blessed. Many have apologized to us for having it "so hard." I must respectfully disagree. In the spectrum of health challenges that could be ours, Mac has taken us to the edge a couple of times and then turned his train around pronto and headed directly for a happier track. He makes this journey about as easy as it can be. As for the fact that we must be on this journey at all? My two cents is this: No matter your challenges, life is about as hard as you decide it's going to be. If you choose to wake up everyday, curse the heavens, and declare "woe is me" before rolling out into the world then, yep, life is hard.

And the real tragedy in self-pity is that it is not what God intended. I know He blesses us with exactly the circumstances we need to grow and learn and become more than we deserve. I will teach nothing less to my kids because I know it to be the truth. I've asked and I've been answered. I want you to know that I know that.

Some days joy comes more easily than others. But it's on the hard days, the days when you must choose joy, that it tends to be the stickiest, stay the longest, and taste the sweetest. It's on those days that it surprises you with how simple life really is and how deeply you appreciate what is yours - all of it. We choose joy.

Home

Home. We made it. And I've been too busy pinching myself to post. I'd apologize, but it's hard to feel bad about anything that's happened in the past 72 hours. It is SO good to be home.

Our freedom flight did not hit the skies until 5:30 Saturday night. That meant we had the entire day to pack it up and pass the time. Together. Outside the 12 x 12 room where we had just spent the last 13 days. Time to do whatever we wanted. I could not stop smiling.

So we drove. We drove 90 minutes to Atlantic City. It was 102 degrees and crazy humid when we arrived. That led to a 10 minute sprint to touch Mac's toes into the ocean for the first time and quickly back to the car. Heat, heart surgery, toddlers; it's a bad cocktail we wanted no part of. Don't worry; he'll get an extended opportunity to put his toes into the sand soon enough.

The flight home was perfect. McKay was an angel. He slept, snacked, laughed, and charmed the cashmere blazer right off the button up-type across the aisle. It's officially impossible to keep your guard up with this kid. Stand back. He'll melt ya'.

Sunday seemed a long day waiting for the brothers to arrive. My sister did not get my message about us being home until their journey home was well underway. She helped keep our arrival a secret from the boys who rolled in speechless. The hugs between us were one thing. I missed them terribly - ached for them, really - and it felt so good to feel their arms around my waist. The reunion between brothers was something to behold. It wasn't wild hugs and laughter. It was quiet, and thoughtful, and a just-let-me-take-a-minute-to-look-at-you moment.

Preston marveled, "No tubes, mom."

Ty patted his head and said, "We need to be careful with him, right?"

Right. However, I cannot guarantee how long McKay will agree to be careful with you, I thought. And after a few moments, it seemed McKay remembered. He stuck out his little Frankenstein arms and began harassing the boys. Grabbing at their necks and shirts and middles from behind. They giggled and gently patted him away.

These brothers are thick and it's a beautiful thing to behold.

Matt and I secretly held our breath until Monday. They called early and asked us to be there within the hour. Here we go, I thought. An xray was about to tell us if the togetherness could continue. Come on buddy.

Everything about McKay said he felt better. He colored in the lobby why we waited for the xray. He seemed happy and well.

I love it when I'm right.






















His xray was clear. CLEAR. As in: No fluid. No effusion. Poof! Gone. Magic.

Our cardio angel could not have been more pleased. She told us to cut one of the six doses of meds he's currently receiving and gave us the week off. We'll check back in next Monday to make sure all continues to look amazing.

We celebrated with a long overdue haircut.





















Then came home for a dance party with the boys.

Today, our hearts all feel more whole. This week has taught us a few things we already knew: Prayers are answered. Hope is always in order. Everyday miracles surround us.

We also learned that hospitals are not true places of healing. They are places of fixing. Of brilliance. Of absolutely life-saving events. But no one leaves a hospital healed. Especially two year olds who cannot understand why every visitor they receive in this strange place brings pain and fear. And, most of all, why mom and dad allow it to happen again and again. No; while we were feeling grateful, none of us felt healed.

Real healing comes when the spirit is allowed to feel safe and cared for and loved. Home is magic. Family and familiarity and routine. Our smells. Our people. Our space. It was exactly what Mac needed to get over his complication. And we are drop-down, on-our-knees grateful for one of the most pedigreed, trained, and skilled medical teams in the world letting go of all they know about medicine and their power to treat, and remembering that their ultimate goal is to heal. Well done.

His Way, All the Way

McKay's xrays and labs this morning were...drum roll please...better. Not completely clear, but improved and good enough to talk the docs into letting us do a follow up on Monday in Salt Lake!!

We just booked the flight home and plan to touch down tomorrow night; one day ahead of our boys' return home from a camping trip with my sister. Can you say, "Surprise!"?

Our Mac's recovery and discharge were slightly less than traditional. But then again nothing about this kid is ordinary.

We are elated.
We are beyond grateful to so many, for so much.
And now we are home bound.

Praise be given.

Paroled

Mac's effusion is unchanged. Through four days of adjusting meds, up-ing doses, back and forth from IV to oral--unchanged.

So unchanged, in fact, that they are talking this morning about discharging us with the promise to stay in the area and having McKay come back for daily outpatient visits through Monday.

At this point the theory is that he may do better outside the hospital than in. Freedom, interest in play and activities, a sunnier attitude. It all goes into the mix of healing and wellness. I think it's a good theory.

It all hit home yesterday when one of the cardiologists said, "I think we're trying to treat an xray instead of a child. Look at him. His sats are good. He's walking, playing, eating, sleeping. He just needs to go to the park and kick this thing."

Post-park and play over the weekend, if all is good Monday--we're home.

This turn of events is both nerve-racking and exciting. I am DYING to love on my other boys. Remember them? Tyler and Preston have been on the party-sleepover-vacation circuit for nearly three weeks now. It's time they had their mom home to make them practice piano and clean up their room :). Hardly. I just want to snuggle, make up stories, play games, see and hear all about the pictures they took on the camera we left them, and read the journal of events Ty's been keeping (just so he doesn't forget to tell us something, he said).

From here we just need McKay to take his meds and show a stable or clearing xray every morning from now until Monday.

I know it's a lot to ask kiddo, but you're clutch. Let's do this.

Sincere Thanks

Last night my husband returned alone to a quiet, darkened corner of the Ronald McDonald House here in Philadelphia. It's a ritual he practices every night. He waits until McKay falls asleep, kisses me goodnight, and leaves me to sleep on the plastic couch at McKay's bedside. It's a generous act; he gives up his place knowing just one parent is allowed overnight and I would only worry and call an obnoxious number of times to check on McKay if he were to stay.

But last night, he was the one to call.

"There is a package here," he said.

"It's full of goodies, and Thomas the Train toys, and cards."

"Wow," I responded. "Who is it from?"

"There must be a dozen cards here Mindi. This is really amazing."

And yes, it was.

I journey in my work life alongside some of the most exceptional human beings I have ever known. We are not just colleagues, we are community. We are confidants. We care--genuinely, sincerely, and deeply for each other. This gift was more than all of the thoughtful things and words packed inside; it was another evidence of the power and blessing I feel in my life from that very special place, so full of extraordinary people.

Thank you for your prayers O.C. Tanner. For this and so much more, we are beyond words.

Soggy

Making the decision to have a child is momentous.
It is to decide forever to have your heart go walking around outside your body.
~Elizabeth Stone

___________________

The fluid is back. It's made itself at home in and around the lower part of Mac's right lung. That also means IV meds are back. And sleepy Mac is back. The next 24 hours will be important. If he responds to the meds, we're on our way to healed. If he does not, we're on our way to another chest tube. Cast your vote for healed, okay?

As for his amazing our-Mac-is back day yesterday? The doctors confessed this morning they were very surprised at how well he did yesterday. Short lived, but soon to return I assured them. We just have to give his body time to figure this thing out.

Come on kiddo, we've got a whole world of summer to enjoy. Let's spring this joint.

Tube Drama

McKay's chest tube fell out last night. More like wiggled itself nearly out and invited a cardiothoraicic surgeon to finish the job. Regardless, it was extremely frightening to his parents.

Matt and I were laying across the hospital bed reading a few bedtime stories to Mac when we both quieted at the sudden sound of suction. We looked at each other and immediately started trying to assess where the sound was coming from. We figured something had gotten loose in the tangle of tubes and wires that criss-cross Mac's body. We got quiet and followed the sound - straight to the bandage on his abdomen covering his chest tube. We called the nurse. She listened. She left to page surgery. The site started leaking fluid. I ran in tears into the hallway and grabbed the first person I could find. Suddenly the room was full of nurses and doctors and xray machines.

Apparently even when removing a chest tube under very controlled conditions, there is a chance air will enter the space and cause a problem with pressures. This can collapse a lung and cause general havoc. So you can imagine when a chest tube makes an impromptu exit, there is high cause for concern. Before we knew it, the surgeon on call arrived, determined the tube had to be pulled and fast. He offered quick apologies that he did not have time to prepare a better scenario and that we had to be there to witness this. Then with a 1, 2, 3, he pulled what seemed like a solid 6 inches of tubing out of my baby as Mac lifted his back and screamed with panic.

Then it was over. They packed the wound where the chest tube had been with Vaseline saturated gauze and I scooped up McKay. He melted into my chest. It was the first true hug we'd shared in more than a week. And with the chest tube out of the way, it was possible.

They started an IV, took another xray, discontinued any further food or drink for the night in anticipation of surgery to replace the tube in the morning. The morning came; this morning came. Another xray. Things looked the same. Hmmm? What to do? How does a kid go from putting out 200+ml of drainage with a chest tube, to maintaining the size of his current effusions with no chest tube?

Whatever the answer, the surgeons are willing to wait and see if he'll maintain. If he does, great. If he doesn't, they will reinsert the tube when he needs it. So we watch. And wait. And hope for the best.

No chest tube this morning meant Mac was virtually free to do what he pleased. He wandered like a drunk out of our room and into the hallway stumbling, but never falling, from wall to wall. He charmed the nurses, found the playroom, explored, colored, and then cried exhausted and was happy to be back to his bed for a nap. So he sleeps and I type; hopeful this little twist of fate provides just the jump start we need to find our way to the door permanently. It would be just like Mac to decide when, where, and how he makes his exit. This is his show, 100 percent.

How Do You Mend a Broken Heart?

Things continue to stay just about the same in the step-down lounge. Still battling effusions. Still some decreased function in the right lung. Still waiting for Mac's chest tube drainage to complete its evolution from river, to stream, to brook, to trickle, to drip, drop, gone.

We are encouraged. McKay took a few shaky, but unassisted steps today and for the first time in a week seemed motivated to get to something, somewhere. He lunged for a sparkly pipe cleaner a woman was using to decorate the windows today and made off like a bandit. He was frantic to get to the train track in the playroom where standing to drive the engines proved a bit too much and, frustrated, he started throwing the trains and crying. Bad behavior, but passion nonetheless. And passion is what I like to see in my fighter.

The battle to keep Mac's original chest tube rages on. For the last two days they have secured the bloody mess of a site with gauze and tegaderm trying to stabilize the tube and give McKay time to be done with it. Replacing the tube, which would require another surgery, is to be avoided at all costs. Assisting the doctors and nurses in changing that dressing twice a day is about more than a mother can take, however. I pray the fluid will subside and we can be done with the entire chest tube fiasco soon.

As we approach 10 days in the hospital, almost 14 since we left home, I thought I might share with you some of what it takes for a 22-month old to mend his broken heart.

(The pictures that follow may be a bit graphic for some--I've tried to choose wisely--but know that you've been warned.)

How to Mend a Broken Heart
(or Just About Anything)

Show up.
That's half the battle in life anyway.
Show up with your Superman shirt on and people take notice.

Allow what needs to happen to happen. It's scary and painful and not at all what you'd prefer to be doing, but sometimes you must simply embrace the necessary.

Employ experts to be at your side. Recovery is complicated. Trust in those who have gone before to help get you through.

Involve your team.
There is no substitute for genuine love in life's toughest moments.

Nourish your soul with fervor.

Be willing to look deeper. Sometimes revealing the change to yourself and others can be the hardest part.

Take time to enjoy little moments. Soak your feet. Make a splash. Do the things that put a smile on your face no matter how serious the situation.

Despite how well you think things have gone, take time reevaluate your results. Follow up is the most important part of assuring the changes you've made will last.

Stay clean. Stay pure.

Rest when and where you need it.

And keep smiling no matter what. Even when the world tells you that you've every right to complain, avoid it.
An optimistic spirit heals.

Best Thing, Worst Thing

Every night at dinner we play a game with our boys called: Best Thing, Worst Thing. Each of us takes a turn telling the very best of what happened that day and the very worst. I love this game because it teaches my boys that we can talk about anything as a family. I also love this game because on many days, my boys joyfully report: There was no worst thing today!

Here's the breakdown of Best Things/Worst Things from another day in the step-down lounge...

Best Things:

• McKay took two wagon rides today and attempted a few shaky steps--the first he's taken since last Friday. He's pretty weak and wobbly for reasons that range from not eating for a week, to healing, and to being basically bed bound until yesterday. He did great!
  

We are not allowed to leave the cardiac floor for our little outings which means we have to make lots of circles. But there is a nice view from a huge window that looks out onto the busy street below. McKay watched the cars go by for a good 15 minutes there today.

• I ran in, out, around and through the Penn campus today. I sweat and felt much more optimistic for it. I also felt completely satisfied at not having to be a college freshman again--oy!
  
• I was also not a brat today. (Complete self assessment, so take it for what it's worth.)

Worst Things:

McKay had a very restless night. He was in a lot of pain and could not get comfortable enough to fall asleep. The nurses and I have been telling the IV and Cardio teams for two days that the IV in his right hand was going bad and his chest tube insertion site was becoming a concern. Today it all came to a head.

After screaming through the initiation of another course of IV meds, Mac's IV site started to bleed. Finally! We were actually happy about this because it meant the IV team had to change it. It seems Mac's audible protests of pain were not enough for them who kept telling us the IV was fine. But when it bleeds, they have to change it. So that meant his carefully wrapped and protected club of an IV-equipped hand switched from right to left where another IV has now been inserted.

Now it was time for some answers on the chest tube. CT surgery came by and said the site was irritated, but fine.

An hour later I was laying in bed with my guy and happened to notice blood soaking through his shirt. When I lifted it up, his belly was a mess.

A CT surgical assistant came in immediately to assess the situation. You see, chest tubes are surgically placed through an incision made in the skin of the stomach. The tube runs under the rib cage into the chest cavity where it allows all excess fluid an escape route. It is surgically inserted and sutured in. Pretty serious stuff. The problem is that when a chest tube gets blocked by a clot or other obstruction, the fluid tries to find the path of least resistance out of the body--aka the hole in the skin of McKay's stomach where the chest tube was inserted--and begins to escape.

It all meant a Class A mess on our hands and a warning that the hole they created for McKay's chest tube is now so large and the skin so disintegrated, they will be unable to stitch it together once they remove the tube. McKay will likely go home with a large open wound which will simply have to heal from the inside out. Gross.

Furthermore, if McKay does not stop draining in the next day or two they will have to take him back into surgery, cut another hole and insert a fresh chest tube. Please no.

Needless to say the entire thing is literally and figuratively a bloody mess. McKay was shaking and purple from holding his breath as the pain of them trying to secure the site today was simply too much for him, even with the help of a little Oxycodone. I truly hope he will forgive me for the dozens of times I've had to hold his tiny little fists down and whisper, "It will be okay," when clearly nothing is okay in the moment. I hate lying.

The entire fiasco wiped little man out for the next several hours. And like the angel he is, he curled up like a cherub and fell asleep. Hopefully to dream of better days to come.

Overall, to say this kid is a trooper would be selling him short. I have honestly never known ANYONE tougher or more splendid in forgiveness and unconditional love. And I think most children come equipped with the same trust and love I see in my McKay. Somewhere between where he is and where life ends, many lose that. So many become suspicious and distrustful and sometimes downright unkind. I worry that this nightmare of an experience for McKay will hasten that process--making him protective, concerned and guarded when trust is what's needed to usher in possibility. I pray it won't.

For now, we're hoping for a rapid decrease in Mac's still considerable chest tube fluid. No more fluid, no tube. No tube, no hospital. No hospital, HOME. If you're already on your knees, we'd appreciate a prayer in that general direction.

Much love--xoxo.

Patience

McKay managed to turn a challenging morning into a
golden afternoon, complete with a visit to the patients-only playroom.

________________________

I was kind of a brat today. I share that only because we're friends.

Here we sit on day five after a radical open heart surgery on my 22-month old son, and things simply are not moving fast enough for me.

Yes, you spell that: B-R-A-T.

It may have well been the cumulative effect of five days of 4 am xrays, 5 am blood-curdling blood draws or that fact that McKay's chest xray came back unchanged for the third day in a row. GRR. Oh, and they put him back on oxygen this morning because he continued to de-sat on and off all last night. By 9am I had pretty much decided it was not going to be a successful day.

I packed a bag of dirty clothes including Mac's cannot-be-without striped blankie he had just puked up all his meds onto and walked my vagabond self to the washing machines in the family area of the hospital.

This is it, I thought. Mac is still draining like a soda fountain from his chest tube and this is going to be our life for a while. I tried to take a deep breath--that's what I always tell my boys to do when they're upset--but I could not get my lungs to fill. I was carrying a weight of my own making and I had attached it right to my chest for me to feel and all the world to see.

Matt tried to console. To check in. But I blocked him out.

He gave me a kiss.

"I am not about to make out with you in the hospital," I told him.

"It was just a kiss," he said.

Yes, that spelling again was B-R-A-T.

To make matters worse I had decided that the agenda for the day included me returning from the laundry to load McKay up into a wagon and take him for a stroll around the floor. If I was going to will him better, it was going to start today.

Instead, when I returned he was tethered to a good 90-minute course of various IV drugs. GRR.

The meds always wipe him out. So he slept for a solid 4 hours after the push. I was getting impatient and worried about MY wagon ride.

Matt came to me and said, "I mapped you a run. You need to get out."

It was true. I have not left the hospital since last Friday. I know in my head it's an unhealthy thing to eat, sleep, and worry in this place around the clock, but I simply cannot leave him. Cannot.

Mac woke from his nap. We loaded him in the wagon and we rode. We rode to the playroom where he was in heaven for about 15 minutes. And then he was tired of sitting up, tried to lay on the floor, and we promptly loaded him up and returned him to bed.

In our short time in the playroom, however, we met a little girl from Tennessee who showed up with her family to get her Fontan operation a long while ago and was told she was not healthy enough for the Fontan and instead got listed for a heart transplant. So they wait. Miles away from home. On a twist of fate they never planned.

On our way back we passed the room of another little girl whose grandmother said before they could take a walk, the nurse had to take her vitals. The tiny little three-year old promptly turned around and jumped into her bed ready for the nurse to do her thing. "That would be nice," I remarked to our nurse who was all too familiar with McKay's tendency to act like he's having his arm sawed off when they take his blood pressure and temperature every four hours. "She's been here for 7 months," the nurse replied. "It's not nice, it's sad."

So the moral today, the day I started as a pity party, but ended snuggling with an ever-improving son who continues to be a gift from God, is this: PERSPECTIVE IS EVERYTHING.

I left the hospital tonight. I left Matt to have some alone time with McKay, and to take a walk and check out the course my sweet hubby charted for me; one I will run tomorrow. I thought a lot about how I chose to act and feel this morning. I knew many would say it was justifiable. But I also knew it was not of God. I am grateful for His mercy and His continual patience and love and perspective.

Here we are. Recovering. From the heart repair we begged for. Performed by the surgeon God has best prepared to administer it. My son is alive and making progress. And, eventually, we will go home. WE ARE BLESSED.

Tomorrow I will get out and fill my lungs and be strong. Because I want and expect the same from McKay. And at this point in the game we all must give our best effort. Because energy, and juju, and positivity, and expectations can be beautiful things if rightly placed, patiently adjusted, and consistently applied. Tomorrow will be a new day. I promise.

90-what?!

Right now, this very minute, Mac's oxygen saturations are at 91 on room air.

I know--Get. Out. Of. Town. :)
But it's true.

They turned off the O2 this morning and he's holding his own.

This is life-changing stuff.

Day Four: Reasons to be Encouraged

Making himself at home in the step-down unit.

This morning we celebrated a simple chest xray that came back clearer than yesterday.

But then the day went a bit south.

McKay was not at all happy.

To make matters worse, every time he sees someone walk by the door to our room, he gets upset.

And if they walk in?

Forget about it. It's tears before they even touch him.

I hate seeing him so jumpy and distrustful.

By mid-afternoon the whimpering was more than he or I could take and the nurse agreed a late afternoon spent in the fog of some decent drugs was worth considering. Even more so because lots of people would be in and out because...WE WERE BEING MOVED OUT OF THE CICU!

Hooray! We're now in the cardiac step down unit and McKay must know it because he's been a different kiddo since we arrived.

A break from the pain of healing seemed to be just what he needed. His first item of business was to take a nap on his belly--incision, chest tube and all. It made me very nervous, but the nurse assured me he was fine. And he looked so peaceful, I had to believe her.

Next, we played Thomas. And despite all of the tubes and wires still attached to Mac's distended little belly (it's full of gas), he decided to sit up and drive his trains properly.

Of course, Dad was right by his side to support his every wobble and offer a little choo, choo, choo action.

More than one nurse has said "These Fontan kids seem to pick a day and turn the corner."

McKay is still draining quite a bit of fluid from his chest (550+ mL/day) so I'm not quite ready to say we've turned the corner, but this afternoon he definitely took about a 2-hour peek around it. We'll take it. And while we continue to play a guessing game with his pain level and the meds to give or not give him, we'll hope he gets better at telling us what he needs and continues to take just a few more steps each day. This kid is AMAZING.

Day Four: Encouraged

Chest xray looked better this morning; not perfect, but better. We look forward to a day of little victories. More to come later.

Day Three: Yucky Lungs, Low Sodium

McKay's lungs are still a little soggy and his blood work tells us that he is low on sodium. We can do something for the latter, but must simply wait and see with the former. In fact, doctor's orders today are to take a wagon ride to get the pockets of fluid in his chest and lungs moving around, giving them a better chance to drain, and to have him eat as much salty food as he'll tolerate.

For now that means laying in bed after a sponge bath eating potato chips until he falls asleep, then having a wagon adventure royale through the halls of the hospital later this afternoon. Out of context it doesn't sound like a bad Sunday afternoon, does it?

They'll do more blood work tonight and we'll cross our fingers for more encouraging chest xrays tomorrow morning,

For now, he looks pretty peaceful.