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.