Tuesday, November 24, 2009

All is Well

It's been 10 days since our "episode" with Ty and I finally feel brave enough to say it out loud: "Everyone is healthy!"

As I held my breath this week (partly in fear of symptoms and partly because I sprayed a near continuous cloud of Lysol for three days straight) seeing who, if any of us, would get sick next, I felt something I have not felt in a long time--fear.

Fear for my children. Fear for an invisible enemy I could not stop. Fear for unknown outcomes and trials I'd rather not experience. My mind calculated and re-calculated contingency plans. If McKay showed ANY signs of a cough we would take him immediately to the hospital. If I got sick, I would go to a hotel. And on. And on. And on. And you know the result of all that constant worry? Lost time. Wasted energy. Worry is not preparation. Planning, preparing; that's different from worry. Worry leaves you feeling helpless. Hopeless. Unproductive. Distracted. Worry is the opposite of trust.

A scripture came to mind this morning as I continued to exhale the week that was. "And the angel said, 'Fear not, for I bring you good tidings of great joy.'" Fear not. It was the very first phrase the heaven's uttered when our Savior descended to mortality. Fear not. The Lord does not want us to be afraid. He wants us to trust. Trust in Him. Trust in each other. Trust in His plan.

And there is a plan. Most days I fall short of seeing what some of the intricate details of my plan have to do with the big picture of what He's making of me. But there are moments; moments when you feel the stars align; moments when people show up at your door or in your life at just the right time; moments when you get the tiniest glimpse of His love. And those are the moments you feel fearless. You feel surrounded by love and want nothing but to give it to others.

I have had more than my share of those moments. I am blessed. After all, it was one year ago today that I lived the most fearful night of my life. One year ago I was trying to stay present in what I worried may be my last day with a three-month old baby who would have his second open heart surgery tomorrow. One year ago, I was trying to trust and failing miserably. One year ago, I wondered if God would let me raise my little McKay just a bit longer. We prayed. We cried. We watched him sleep. And we woke to a morning where we had to trust in our strength to purposefully hand him over to another. We had to trust doctors and nurses and surgeons and God. And God, He is kind. Of course, all was well. McKay has exceeded every expectation of growth and health and quality of life in the past 12 months.

And this year? This year has been among the best, worst, hardest, most fulfilling, soul searching, growing times of my life.

And for that I am thankful.

Sure we're back on oxygen. Sure we're slip-sliding our way back into the operating room. And on the outside it may seem we have not come that far. But I can tell you, on the inside, nothing will ever be the same. We are forever changed. Changed by love. Changed by trust. Changed by answered prayers--and time. Changed by our perceptions of the time we're each given--it is precious and fleeting and not at all our own. And as awful as it was to feel fear again this week, it was good to be reminded of the contrast between fear and faith. They are opposites. They cannot exist in the same same heart. And I choose faith.

Sunday, November 15, 2009

Just that fast

Is it really possible for a healthy six-year old boy to go from rocking the first grade science fair, to being ambulanced to the hospital because he cannot breathe on his own in less than 12 hours? Yes, yes it is.

Ty took the ride every little boy dreams of and every mother has nightmares about Friday morning. After starting what seemed like a simple cough Wednesday, less than 48 hours later he was barely responding to us and struggling to breathe. After a good time at the school science fair Thursday night Ty came home, practiced his spelling words and was promptly tucked in bed. I gave him some cough medicine to ease what seemed like an innocent change-of-the-seasons tickle in his throat and off to bed we went. By 10 o'clock that night when Matt and I checked on him he was wheezing and spiking a 104-degree fever. We were worried. I called the 24-hour nurse hot line. What a joke.

"Make sure he washes his hands frequently," she read to me from a computer screen.

"Look, I'm telling you his symptoms and I need to know if I should take him to the hospital tonight or wait to see his pediatrician in the morning," I said.

"Give him some Motrin and call the doctor in the morning," she advised. So I did.

We arrived at the doc's around 10am. By 10:20 he was on oxygen support and undergoing a rapid strep and H1N1 test. They both came back positive. I was shocked. No. No way. We have done EVERYTHING short of crawling into a hole to prevent this moment. There was no way this could be happening. I could feel tears running down my face.

The doctors conferenced and decided to give him an Albuterol treatment right away to try to open up his lungs. They slipped the mask over Ty's nose and mouth and he began to cry.

"Am I going to die?,"he asked me. "I'm not ready to leave you."

Great. Another star on my forehead for overstressing the absolute necessity of the H1N1 vaccine he received 10 days prior by employing fear tactics. "Kids are dying from this flu," I told them. "You HAVE to get this shot." Yes, I know. I'm awesome.

"Of course not buddy," I said. "Do you want me to ask the doctors so they can explain it to you."

He nodded because moms lie, but doctors have to tell you the truth. It's the law.

His doctor patiently explained that we were not pioneers. If we were he would be in a bit of trouble. But since it's 2009 we have medicine and oxygen and all kinds of ways to help him get better quickly. I could tell he believed her, but he was still pretty upset.

"We're calling an ambulance for you," his doctor said.

"I have my car. I can take him," I told him.

"He needs an ambulance. He cannot take that ride without medical supervision."

Ughh. My stomach sank. This was bad.

When we got to Primary's they started more breathing treatments.

And by the end of our three days there, he was a pro.

Of course, a little room service never hurts in the healing process either. Too bad he didn't feel much like eating until it was near time to go.

It was easy to tell when he was feeling better. Suddenly, he seemed to have a home office set up. He was playing games online. Taking phone calls from friends. Requesting Popsicles from the nurses. Honestly, this was life and death just 36 hours ago? Yea for good drugs!

We packed up our little circus and made our way home with a shiny good-as-new Ty in tow about 11:00am Sunday with a note in hand that says he's ready for school tomorrow. Really? I think I may give him an extra day off for good measure.

The scary part now is the waiting. Who will show symptoms next? Maybe all of us, maybe none of us. The doctors couldn't say for sure. For now, we're making Ty wear a hospital mask when he's around his brothers and I'm boiling, make that washing, everything the child has even thought about touching in the last week.

I am here to tell you to PAY ATTENTION to your children. Little cough, slight fever, acting just a bit off? TAKE THEM IN. Do not wait. Who knows what kind of a mess we'd have on our hands if I'd let Ty go even a few more hours. I really cannot even think about it.

Even if your kids have had the first of their two H1N1 shots, they are not immune. Apparently the vaccine takes a good 10-14 days to provide any protection. Can you say false sense of security? I had for all intents and purposes, checked the H1N1 worry off my list. They think Ty contracted the virus about 8 days following the vaccine, but it is possible he was infected a full 7-10 days prior--making it possible he even caught the virus while getting the vaccine. Perhaps the CDC will rethink asking thousands of people to gather to receive a shot for a flu that is best prevented by avoiding large gatherings of people...!!

As for us, we'll roll with whatever is to come. I'm running a little low these days and can feel myself getting very close to the edge. The edge of what? I'm not sure. I think I'm too afraid to look down. Tonight I'll try to regroup. To collect a little cup of calm and hold on tightly.

But please, I must request that no one else tell me,"What have you done to deserve this?" "Why do bad things happen to good people?" Those are questions that make a lot of assumptions--about us and about the way God works. My God loves me. He sees me through these trials. He doesn't subject my children to life-threatening situations to punish me. Yes, I have many flaws--most of which I'm fully aware of and am working on the the best way I know how. I need the Lord. I am not afraid of Him. I do not blame Him. He has once again shown His mercy and once again reminded me of the need to simplify and focus on what matters most. Here's to hoping my soul will be brave enough to do what He asks.

My life is full. I send so much love to all of you for your prayers, support and thoughtful actions. It's an amazing feeling to have family and friends who might as well be blood to trust and rely on. We are blessed. xoxo.

Friday, November 6, 2009

Here to Stay

Over the course of the Halloween weekend, the third musketeer went from this:

to this:

And the verdict is that he will stay tethered for the foreseeable future. After a weekend experimenting with extra oxygen support, McKay's cardiologist suspects more renegade collateral veins have sprung up around his heart and have been steadily causing his sats to dip over the last several weeks. Basically, the body is growing new veins to "help" his heart, but they are wreaking havoc on his ability to oxygenate his blood. Last time this happened they whisked Mac right in for a heart catheter and coiled off the vein. Not so this time. His docs feel it's too soon (the last procedure was just performed June 30, 2009) and if we pursue cathing and coiling each time, it's a dangerous dance he will most likely continue to repeat.

So for now the thought is to let those nasty collaterals have their day just so long as McKay is stable when he's on oxygen. It's been amazing over the past week to realize how blue he truly has been. He gets a good 8-10 percent bump in blood oxygenation with the support of the tanks which puts him between 80-82 percent--the same levels he was hitting in July following his cath. When we take the O2 off to bathe him or change his clothes or even just to give him a trial run at sustaining the 80 percent range on his own, he quickly takes on the now more noticeable bluish hue that we had thought normal just a week ago and rings in at a disappointing 70-72 percent.

Honestly, if McKay can survive being the little brother of these two crazies, I think he'll be good to go.

My main concern at this point is to get him feeling better. I want him to be able to play and climb the stairs and drive me crazy like every 14-month old should do. He does a good job for the most part, but it could be better. I am also extremely concerned with the long-term effects of such low saturations. What does it do to a rapidly developing brain to receive oxygen as though you live at the top of Everest every day? Disappointingly, no one has any good, long-term answers for me on that front.

If I'm being totally honest, I'm approaching panicked that the child has NO words at this point. Not momma. Not dada. Nothing. He occasionally babbles--but only occasionally. The strong, silent type? Maybe. But it's hard for me to separate what's normal baby stuff and what's a side effect of his funky physiology.

We're off to the pediatrician's now to get his ears checked once again. The child has battled chronic ear infections for the last three months. At 3:30 this morning he was as inconsolable as I've ever seen him. For McKay to be brought into mom and dad's bed, given a bottle and propped up to watch his favorite episode of the Little Einsteins only to continue wailing indicates a serious problem. Rocket can usually sprinkle sunshine all over his face no matter the situation. I'm anxious to see what's going on.

So that's that. Whaddya gonna do? It looks like we'll be corralling a tethered toddler until either his sats start to slide even further or we find ourselves a surgeon and McKay is deemed physically large enough to pursue the Fontan. There are several complications to his Fontan operation that make the cardiologists inclined to wait. Not the least of which is the fact that because of his dextrocardia (his heart lies inverted on the right side of his chest) the Fontan repair will have to be modified so that his heart doesn't actually sit on top of the new vessel. Sheesh--I'm so grateful there are smarter people than me in the universe who are willing to figure this thing out.

One great victory to report this week, however, thanks to some incredibly thoughtful neighbors and 45-minute drive to Provo, the boys are now all vaccinated against H1N1. I sure hope finding round two of the shot proves easier than round 1.

We've decided to get pretty vigilant about McKay's isolation considering all the bad junk floating around our neighborhood and workplaces. So if you're well and you want to play, please come over and give Mr. Mac a change of scenery. We may get him climbing the walls from sheer boredom by the end of the season.
Here's hoping for just a few more sunny, crisp autumn days. xoxo.