Tuesday, July 27, 2010

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.


video


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.

Friday, July 23, 2010

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.

Thursday, July 22, 2010

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.

Wednesday, July 21, 2010

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.

Tuesday, July 20, 2010

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.

Monday, July 19, 2010

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.

Saturday, July 17, 2010

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.

Thursday, July 15, 2010

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.

Wednesday, July 14, 2010

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.

Tuesday, July 13, 2010

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.

Monday, July 12, 2010

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.

Sunday, July 11, 2010

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.

Day Three: Prayers Please

Last night they moved a twin bed into our room so that Matt and I can trade off cuddling and comforting our little guy. He's pretty jumpy with all the people poking at him these days and the nurses feel he'll need less sedation if we stay as close to his side as poissible. Assignment accepted.

Our little sleepover was going well last night until Mac started puking. Poor thing. It took a lot out of him and put me on the hunt for a washing machine to clean his favorite blanket. The blanket was washed, dried and delivered just in time for him to clutch it while they placed another IV in his wrist.

We're hopeful the activity and trauma subside quickly.

Unfortunately, chest xrays this morning showed hazy lungs and some partial collapse. Buddy is breathing much harder today. Prayers please for the fluid to clear quickly.

We're hopeful the news will improve soon.

Saturday, July 10, 2010

Day Two: Progress

McKay came off the sedatives well and even opened his eyes a few times this afternoon. A difficult feat because his eyelids are so swollen you'd think he'd been in a bar fight. They have him on three diuretics right now to try to drain all the excess fluid from his body. His chest tube is still very active and it looks like it will be a day or two before he loses that nasty portal of junk. The good news is that he is draining instead of holding onto the fluid which can be very dangerous, so we'll take it.

I did get to hold him today which was a great milestone in the healing process. He napped and I rocked. It was good couples' therapy.

We're looking forward to a much less eventful night and possibly some real sleep. Thanks so much for all the good energy, prayers and generally good ju ju you have sent our way--we feel it, McKay feels it, and it heals.

Day Two: Good Morning

Still very sleepy, but even more thirsty.
McKay is making small, but positive baby steps this morning.
With his recovery that is--obviously not his hair. :)

Tough guy had a rough night last night. After an unexpected and absolute knock out from the sedatives administered after surgery yesterday, the nurses had their work cut out trying to figure out the right combination of painkillers and sedatives perfect for keeping McKay comfortable but not completely gone. It was a tricky science experiment that took most of the night. Poor little guy was quite uncomfortable and pretty tense. By about 6am, though, they had it figured out and he's been resting comfortably ever since.

The most encouraging baby steps of the last few hours include:
  • A thirsty McKay desperate to down as much pedialyte as we'll give him. Little Goliath would probably prefer a steak, but all things in good time.
  • The removal of his AR line and pacemaker wires

They just decided to take him off of his sedatives and see how he does when the fog lifts. His chest tube is still draining quite a bit which was expected as Dr. Spray decided not to fenestrate. Chest xrays looked clear and good this morning so we're just taking things one step at a time. This is all about listening to McKay as he listens to his body. And all in all, his body has done brilliantly so far.

Friday, July 9, 2010

Update 3

Just in case you thought that Mac's insistence on sleeping with a blanket over his head could be masked by a lot of drugs, you were wrong.

Matt

video

Update 2


Surgery went well. Dr. Spray finished in lightening speed (a local joke I'm told among the nurses that when Spray has your case you'd better be ready because the child will be done and down in the unit in 5 minutes). And while I'm not sure fast is always good, Spray is both fast and good.

I was brought to tears today by an anesthesiology fellow who told me with all sincerity that McKay was treated by arguably the best surgeon and lead anesthesiologist in the world. So good to hear. So good.

Of course that means great groundwork has been laid, but it does not guarantee a clear passage yet. We've been told that we still have 2 to 3 days before we should fully exhale. In three days we should be able to tell how well his lungs and heart are responding to the radical change in pressures the surgery was meant to cause as well as McKay's tendency (we pray not) to have pleural effusions (fluid in and around the lungs) resulting from the change in pressure. Only time will tell and all eyes will focus on the daily chest xray to tell the story.

In the meantime, McKay is having a bit of trouble waking up. A round of painkillers given at 11 am and meant to last about an hour has still not worn off and it's nearing 4:30. He's still out cold. He's breathing well and rosy pink, but we're still waiting to apologize face to face for the semi-ambush he experienced today. Ugg, I wish there was a nice way to tell a two year old what's about to happen to their very sweet heart. Or maybe it's better they don't know. I hope he has to ask me to tell him the story of his scar. I'm sure I can weave one heroic tale of bravery and hope that's not so far from the truth. All eyes are on you to make it one heck of a fairy tale McKay; fight on.

The Big Day: Update 1

We arrived at the hospital at 6am. That's early, but not nearly as early as 3 am when Mac woke up hoping for a little drink. No such luck bud. And those pre-surgery food restrictions meant a protest for milk turned into a showing of Horton Hears a Who. There are definitely worse things than cuddling with your toddler in the middle of the night.

After checking in with the cardiac center we were taken to pre-op where we discovered a rash on McKay's chest. Really?!? Of course that meant a surgery consult was needed to decide if they would go forward with the procedure. It was soon concluded that the rash was nothing more than skin irritation likely, and ironically, caused by the gel they use to do the echocardiogram. He was cleared and preparations pushed forward. Pictures of our silly, tired little man to come.

They took him back around 7:30am and whisked us up to meet with his surgeon, Dr. Spray. This seemed completely unfair to me as the good doctor clearly had a lead on us from a brain power standpoint going in. Now, we had just handed over our child and we were expected to talk somewhat intelligently to the person who would make some of the most critical decisions of McKay's life for him. Regardless, he was kind and confident and gentle. Exactly what you'd hope for.

He is also FAST. We were just told McKay is coming off the heart lung bypass, being brought out of circulatory arrest and will then have his body temperature warmed back up. Literally back to life. Three short hours. Amazing.

We'll post pics as soon as we can, but so far, so good. Praise be given.

Thursday, July 8, 2010

Little Lines

We all have little lines we draw in life. How far we'll go with this... or how long it will take us to get to that. We draw those little lines in the sand--in our minds--all the time.

McKay has a different little line. One to which I've become quite attached.

This is the second of two large scars McKay bares from his previous surgeries: The Blalock-Taussig Shunt which he received at just two days old and which left him with a large semi circle of a scar that extends under his right arm and around to his back and the Glenn or Hemi-Fontan which left the perfectly-centered beauty you see above.

And I do think it's beautiful.

I'm actually a little sad it's getting replaced tomorrow. Replaced with a new line that will tell the story of his Fontan. I'm sad because this little line has come to symbolize a strong will, a fighting spirit, a reason to be. It was the result of an impossible tomorrow tackled and overcome when Mac was just three months old. It came when I was in a state of mind to think this was a good day:


You see, Mac's tiny little line and me--we have a history. It saved his life. It taught me about hope and faith. Real faith. It taught me what it means to appreciate. Days. Hours. Moments. Time. And it has given us just that: time. But as tiny little lines are want to do, it's time to be redrawn.

So McKay, as I sit and listen to you breathe in the makeshift crib next to my bed tonight too many miles away from home to count, I will not sleep. I will worry and pray and think silly thoughts about missing your beautiful, perfect little gift of a line. Because that's what moms do in situations like this. Because there is nothing else to be done.

I want you to know that today, as we ventured out to the aquarium to see the "ish" (primarily just so I could hear you chant that as we walked past all the tanks, "ish, ish, ish"), I saw in you the man I hope this surgery will help you to become:

You were thoughtful and curious and happy.


You took time to size up the situation and appreciate the beauty and wonder that surrounded you.



And then you walked right up to confront, explore and experience it all face to face.



Please do that for me tomorrow little one. And I will remind myself to do the same.
xoxo,
Mom
_________________________________

If you're curious, here's a little more about McKay's procedures straight from the doctors who will operate on him tomorrow:

Single Ventricles and The Blalock-Taussig Shunt

Wednesday, July 7, 2010

Let it Begin


Here we are. Philadelphia.
It's the adventure we could not stop thinking about but felt would never come. It's finally begun.

We said our goofy goodbyes yesterday morning. Driving away from the house with my boys waving on the porch just about broke me in half. Don't get me wrong-- I'm all about waving good bye for a week to go to Tahiti or Hawaii or anywhere a little sand and some quiet time with my hubby is involved. But this was different. This was goodbye and I'm not sure when I'll be back. This was I will be on the other side of the country, but I will figure out a way to get you whatever you need. This was I will try to bring your little brother back a bit better than when we took him. I don't want many more goodbyes like that.

We breezed through the airport. My good friends and running buddies Randy and MaryAnn called a friend at Delta who helped us to our gate. Security was a breeze--I've honestly had more trouble going solo before. And we all did a happy dance for being allowed to pre-board!

Then we watched movies.


Ate cookies.




And played peek-a-boo.




McKay could not have been better. And except for the guy behind us who had to be separated from his daughter for making her cry (seriously!), the flight was great.



By the time we arrived, McKay was exhausted.



And it was HOT.



When we landed we were greeted with a voicemail that told us all of the local Ronald McDonald houses were full. Incredible. And incredibly sad. So we moved into the local Sheraton, took showers and curled up on the bed. Mac knows how to chill. I hope to take the same picture in a week minus the purple feet!


I brought all of McKay's bedding from home hoping to turn the hotel crib into a familiar and sleep-inducing sanctuary. Wait? He never sleeps at home! What was I thinking? Our first night was less than restful, but that may have had something to do with the 85-degree room. I think the power grid was on overload due to the record heat in Philly and last night we experienced a little energy rationing. Oy, it was hot!


We arrived at the Children's Hospital this morning for a battery of pre-surgery tests and exams. Mac was an absolute champ through all of it.



He had an echo, unsedated, which I was sure was going to go south quickly. But somehow he lasted almost an hour of being covered in goo and wanded over.


They even made him turn upside down so they could scope his heart from the vantage point of his neck. Seriously? What almost 2-year old lets someone do this? Big thanks to Tom & Jerry for distracting us through the experience.



When we arrived back after it all, McKay used the arm that had not been poked for blood draws to drive Thomas until he simply could not stay awake any longer. (I know. He's laying on a hotel floor. Gross. He was promptly sanitized following this picture :).)

So that's it. We're here. Travel was excellent. The hospital was ready for us. We have tomorrow to rest and play and then we're back on Friday for the real deal. We had the "talk" today right before you sign the "form" that says you understand all that can go wrong and likely complications. I hate that. I'm realistic, but much prefer to concentrate on all that can go right. And we are poised to have so much go right.
One last thing...

I have faced some questions about our decision to be here; to bring McKay to Philadelphia. To leave my other boys behind. And I want to explain why--

This decision was made with great difficulty and heartache. We are not drama seekers. We would have preferred the surgeons at Primary Children's in Salt Lake do this in a heartbeat--had they felt comfortable. The truth is that when we met with our cardiologist about McKay's need to take this next step and the fact that the hospital had not yet recruited a senior surgeon to replace our FANTASTIC Dr. Hawkins, McKay's case was presented to the other surgeons. Their response? "Does the family have other options? We will take the case if we have to, but if the family can seek treatment elsewhere, they should."

This is not to say that the surgeons at PCMC are not amazing, fantastic, talented, life-saving miracle workers. They absolutely are. However, in McKay's particular case, their lack of experience doing the Fontan on dextrocardic kids trumped ego. And referring us out to another facility--the nation's leading pediatric cardiothoracic center--with surgeons more seasoned in what McKay needs is the most amazing, fantastic, talented, life-saving miracle they could preform for him. And for that I am grateful.

Philly is hot and busy and poised for miracles. We have done all we can to prepare, now is the part where we let go and let God. We are in good hands all the way around.