Sunday, September 27, 2009

Latest Check Up

We made the drive up the hill to Primary Children's this week. It was time once again to check in with McKay's cardiologist. After a quick weight (just shy of 26 pounds--honestly, can you believe that?) and height update (32 inches--90th percentile), our big guy got a quick EKG (the procedure you see in the pictures) and then faced his moment of truth with the pulse oximeter.

We have such a love-hate relationship with this obnoxious beeping wonder. We love it when the machine spits out good numbers that let us know Mac is receiving all the O2 he needs to keep all his systems running. We also marvel at how such a tiny little light on a such a chubby little toe rules many of the most critical decisions we will ever make. We hate it when the numbers are low. That means it's time to end the chit chat we're making in the moments before the numbers settle in for a good read and the mood in the room is about to change. Yes, we hate the pulse oximeter for its ability to provide a deep and silencing buzz kill.

This time around the reading was low again (68 -72) . Not good. He should be between 75-85. But then again it's low 90 percent of the time--always has been. I was sure his cardiologist was going to tell us to start up the oxygen. Instead, she wheeled herself over to the computer and started looking over McKay's history. As her mouse scrolled up and down his information she asked if we'd been spot checking him at home. I told her we had. Then she asked if we had any oxygen at home. I said we did. Then I raised my arm to the square and swore like a Boy Scout that our home monitor always read between 75 and 78. She turned back to the computer.

A few minutes later she said she wanted an Echo cardiogram done before she made any decisions. And just like that we were in the Echo room trying to get McKay to take a bottle watch a show and lie still why the tech spread goo and her magic Echo wand over his chest to take an inside look at his how his valves were functioning, specifically his aortic valve. To my great amazement McKay was the perfect patient. They took amazing pictures of his heart in all its funky glory. I really hope to get a video of it someday. It is hard to wrap your brain around how a heart that is shaped like that functions at all. The body is indeed a wonder.

The best news of the day came when McKay's cardiologist told us that the echo looked great, practically perfect in fact. All systems are still as tight and strong as we pray they will stay. Even better, the echo convinced her that Mac could stay away from the tubes for now. His low saturations are still a bit of a mystery, but the news earned a deep exhale from us.

McKay is so active right now, huffing and puffing his way around his kingdom. He gets winded quickly and has a tendency to rest his tired little noggin on the carpet for a few moments now and again, but once he feels recharged there is absolutely no stopping him. He is a one-man wrecking machine without time or patience for the tubes that would prove something akin to tying a lasso around his head. I seriously don't know how other moms do the oxygen thing once their little ones are walking and crawling. My hat is off to you for all the patience and worry that must come with that necessary evil. I know we will get there again, but for now, we're tube free.

We made several promises to check his sats regularly, to come back in if his lips get any bluer or his naps any longer. Yes, yes, and yes. I guess this is all part of being in waiting mode. Waiting for the next step. Waiting for the hospital to find another senior surgeon. Waiting to see if we will seek experience and know-how out of state. Waiting to make it through another season of sequestering Mr. Mac away from the many, violent germs that have just begun to make their debut. Waiting, waiting , waiting for answers.

We have decided that McKay will get the H1N1 shot this year. We had been on the fence about it until our card said to get the shot. Apparently even if the kids can beat the flu, the lasting respiratory effects are severe (and could prove a fatal complication for little sweethearts). She says the outbreak will be fast and widespread and encourages getting the vaccine as soon as it's available. Decision made.

As long as we're talking about shots, Mac's next (and hopefully last) season of Synagis shots will begin in a few weeks. The vaccine is designed to prevent RSV. The bummer of this miracle drug is that it only has a 30-day life in the body. So once a month for the next five months McKay will receive his dose of this nasty blessing. The shot is a thick, painful one that takes longer to give every time the dose is increased. (I've honestly never seen a shot given so slowly. It makes me tear up every time I help the nurse hold his chubby little thighs down.) Mac's dose usually goes up monthly as it is tied to his weight. The cost of the shot is also based on the amount of the vaccine required. Last year we watched the cost of each shot increase from about $1,300 all the way up to over $2,500 for his last shot of the season. Oh well. We'd rather meet our deductible preventing illness than in the hospital fighting it!

So much is swirling in my head about the next 12 months of this journey and all that it will bring. Yes, we are anxious. But we are so blessed to still be on the journey. There are many who would do anything to have my worries. Instead they only had their babies for a few hours, or days or months, or --heaven forbid--years, before the Lord called their courageous little angels home. I think that thought and say a pray of thanks to accompany it every day.

I look at examples like Paul Cardall; a miracle of a man who says, at 36 years old, that at just a few weeks post heart transplant he has never felt more healthy in his life. The truth of that statement makes me want to sing for him and weep for these little warriors. How do they feel every day? Would you and I even get out of bed if we felt their "normal"? What is it like to be them? Will they ever know the difference? McKay's smiles tell me that there is much of life worth living no matter the vessel God has asked you sail in this life. And sometimes when we catch each other's eyes in the quiet moments of the day, I know he is grateful his father and I made the decision to let him sail. No matter the length, no matter the circumstances; life is a gift.

Monday, September 21, 2009

What if?

Two weeks between posts. Ughh. I know--it's less dry spell, more drought. I have started no less than half a dozen posts on various notepads I keep around the house. I write them as I wash the dishes, rock my babe to sleep, sort the laundry. And although my scribbled notes assure my thoughts don't vanish, they hardly do much to share them either. In an attempt to get this derailed blog permanently back on track, I've decided to revisit my here, there, and everywhere notes and put them in ink (so to speak) here in this catchall cyber space of mine. Let's start with this one.
I'm training for a marathon--did I already tell you that? It will be my second. My first foray into the world of absurd tests of endurance was the 2007 Salt Lake Marathon. The race may have come too early in my running career--just 10 months after I laced up a pair of running shoes for the first time--or I may have just underestimated the time it took me to cover the distance while training. Personally, I think my downfall was a wicked sinus infection that had my face feeling more like the morning after of a fist fight than sickness, but that first marathon did not go as planned.

It wasn't that my time was particularly bad. I think it was around 4 hours and 26 minutes. It wasn't even that it required medical attention and mild sedation to fix my mangled feet following the run. It was the simple fact that the race was just not as fun as I'd hoped it would be.

I remember crossing the finish line feeling relieved, but not satisfied. I thought, "Huh, I think I'm going to have to try that again."

Two years and one more child later, I'm ready to do it again. And somehow, this time already feels more fun.

The feelings of fun might be the fact that the St. George Marathon boasts about 9,000 more runners than my previous 26.2. I love running with/by/along side people. I think about their stories, their clothes, their reasons for devoting hours and hours and hours to the practice, discipline and sport of running. I think about their bodies--shaped, molded, sculpted by running. If I'm being honest, I think about their thighs and whether or not mine should be moving faster than theirs. It's semi competitive, semi voyeuristic, semi crisis-of-self-confidence meets motivation-by-any-means-necessary. Sometimes, you've simply got to draw the strength from wherever you can find it in the moment.

I love the crowds of family that come to support other runners. I love their clever signs, their adoring children.

I love the aid stations set up every few miles. Their carefully filled cups of water and Gatorade all in a row. I love the cheerful race volunteers, the sound of the paper cups crashing to the pavement to become part of the confetti that lines the race route for yards after each aid station.

Yes--I run to be part of the party.

I spent almost all of last week in Boston for a conference. It was a busy week that took nearly as much coordination to keep my family running in my absence as the conference itself. (Note to self--five nights away from my babies is too long right now. Oh, how I missed their angel soft cheeks and smelly little mitts.) Although I was in the city for work, I woke early for a little running pleasure.

The mornings were beautiful as I wound my way through the streets of this most historic city. First up from the harbor to Boston Commons, through Beacon Hill and then along the Charles River. The route had a thriving community of runners, each keeping their own pace alongside the teams of rowers methodically urging their vessels forward in the river beside us. It was peaceful, inspiring.

I say inspiring because in order to qualify for the great race that is the Boston Marathon, I will need to finish my jaunt in St. George about 15-20 minutes faster than my practice runs translate into my projected finishing time. (In running, 15 minutes is a LOT of time to shave off your pace.) But my little run in Boston started me wondering, "What if?"

What if I ran each mile just a bit faster? What if I pushed my body just a little harder? What if I could shave 46 minutes off of my first marathon time and claim the 3:40 time required for Boston? What if?

What if I could do it all just a little over a year post-baby, post-surgeries, post-new outlook on everything in my life and all in a still sleep deprived state? What if?

Of course it's okay (really, really okay) if I don't qualify to join the Boston race and its throng of 25,000 pavement pounders. First, I don't know if my body could handle the pace without some serious post-race repercussions. Second, it's been a long training season and quite frankly I'm just ready for the race to be here and done.

That said, one cool, gray morning running along the Charles River may have been the only taste this runner needs to move my well-soled feet just a bit quicker. After all, the faster you run, the faster you're done, right? Honestly, if this year has taught me anything it's taught me to not be afraid to dream and plan and try. Here's to daring to entertain my what if's. What are yours?

Monday, September 7, 2009

Not Me! Monday: A Sudden Departure

I am home and able to post on this glorious Labor Day because I did not leave our family vacation a day early. After wrestling McKay for two sleepless nights in the family cabin near Flaming Gorge, I did not cry uncle and through exhausted eyes announce that the baby and I were driving home. Tonight. Not me!

Nevermind it was a day early. Nevermind that my decision to pursue sleep in softer sheets meant Matt would have to accommodate the wishes of our two eldest who would never leave the land of rocks and sticks a minute earlier than originally promised. Nevermind that it meant Matt would sit in between our two blabber mouths and their car seats in the sort-of-a-backseat of his dad's pickup for the 2 1/2 hour ride home. (Yes. He is a SAINT.) Yes, nevermind indeed because I need more than three hours of highly interrupted sleep to function, let alone manage perky.

No, I would never assume my in-laws could forgive such a sudden departure. Except, of course, if I (and McKay's red eyeballs and constant whine) announced our plans so matter-of-factly that no discussion was required. Really, McKay is cute, but after a solid 36 hours of off but mostly on crying, they too found the strength to wave bye-bye.

I would regret the decision a little more had we not had such an amazing night of sleep last night and were McKay not sleeping so soundly through his morning nap. ~Sigh~ Sometimes exiting stage left is all one can do to preserve a little sanity.

Wednesday, September 2, 2009

Lost and Found

Sometime in mid-August I put this journal of a blog down and ran outside to play. Although I found it once to commemorate the culmination of McKay’s rookie season, that little (but important) post was the beginning and the end of it. I think—make that I know—that it wasn’t so much that I couldn’t find my blog as I was wrapped up in celebrating and adjusting and transitioning through a glorious season that kept us out of doors and away from keyboards.
This summer has been a season of fondant-covered firsts,

and parties overflowing with people we could never be without.

A season of painted faces,

and snow cone tongues stained the color of summer bliss.

A season of brothers and bounce houses.

A season of special new cousins born on the very day so many angels were gathered around to sing Happy Birthday to our cherub that we believe
one tumbled down to stay.

Welcome little Izaac Shane. We are honored you would make your debut on McKay’s first birthday and look forward to the many more you will share in the years and years and years to come.

A season of school days where angels just a bit older and leaner are ready far too soon to spend the day away from mom. Where bells and lunch and recess and the color of your pencil box makes the world go round.

A season of unrestrained sunshine and answered prayers.

More adventures to come...