Sunday, December 27, 2009

This Christmas

Despite our distractions, this Christmas has been a season of simple joys.

Chilly trips to see the lights

with silly brothers who (although they would never admit it) are best friends.

New pajamas on Christmas Eve.

The togetherness of opening gifts,

and watching months of anticipation end in priceless smiles.

It was figuring out new toys,

and taking time to relax with a good book.
Christmas was family.
We were together and happy.
Bring it on 2010--we have each other.

Wednesday, December 23, 2009

The Spirit in Which It's Given

Our Monday appointment went far better than the Sunday fiasco. My regular doctor and all his great nurses were on the clock and they helped make the best of a bad situation. Despite a few days on steroid treatments, Ty's still junky cough earned him a series of chest x-rays. Maybe pneumonia, the pediatrician said. Awesome, I thought.

While Ty went with the nurse to get x-rays, we took a look to see if McKay's ears had made any progress on the new antibiotic. They were still infected, but had stopped pussing. I piped right up and said after talking to so many people whose children have tubes in their ears, I was convinced we should go forward and relieve my little guy of at least this one battle. My normal smiley pediatrician then pulled back and got very serious. McKay is not every kid, he said. This is a huge decision for him. If there is absolutely any alternative to tubes, we must pursue it. He then said he wanted to give Mac the last round of shots and an additional two weeks to see if his body could clear the infection. If not, then we would consider the tubes. So two more weeks it is. I may need a second opinion in the interim.

By the time Mac's shots were being drawn, Ty's x-rays were back and thankfully they showed no signs of pneumonia. However, his still reactive airway was begging for some additional assistance. Ty, too, was put on a two week trial with a twice-a-day inhaler. He's almost done with his oral steroid pill and it can come none too soon for Matt and me. The drug turns Ty into a whirling dervish. I cannot imagine him being more active or chatty than if he had just downed a candy bar and a Coke. One more dose. Just one more dose.

So it's more of the same here. Waiting. Hoping. Doing what we can. And praying.

I've done a lot of thinking this week on the word Spirit. The Christmas Spirit. The Holy Spirit. The spirit that resides in our home. They are all gifts. But they are not gifts that are so much given as they are received. No one can give you the Christmas spirit. No one can award you the companionship of the Holy Spirit. And no outsider can impose a permanent change of spirit in your home, your life, your heart. No; the spirit in which you live, rely on, and trust is determined solely by what you are willing to receive.

And, as you know from my last rant, I have not been willing to receive much of anything these days. My shield has been up, my sword drawn. And yet I was fooling no one. I was helpless to defend my brood from what felt like vicious, unwarranted attacks. And finally I was defeated. My cry to the Lord was to make it stop. It should have been to help me understand.

I received an answer to my prayers this week, strangely, in the form of a phrase that has been playing like a broken record in my head for about three days now. I want to think it's from a poem I've read somewhere, but something tells me it was written just for me:

To live life in this body was more than He could ask,
That's why I volunteered in a life already passed.

No, I usually don't receive answers to my prayers in prose. But this particular little couplet has been a reoccuring thought I cannot explain. As I search for answers as to why McKay (or any child) must come to this life in an imperfect body, or why our little ones must suffer at all, the more I am convinced it is more about us and less about them. We have much to learn, and they have much to teach. And for some reason, as part of a plan that is far bigger than I can understand, they proved their allegiance to our Savior through the ultimate act of love--they volunteered to accept a calling less glamorous or easy than we were willing to take. I strongly believe they were not compelled or sentenced or made to accept the life they were given. Instead, they gave freely and accepted a role that requires only the most brave and most pure volunteers.

The reality is that Mac is a perfect innocent who has experienced more pain in his 16 months on the planet than many of us will (or could) endure in our lifetimes. And yet he smiles. And yet he loves. And yet he trusts.

It's that last part, the trusting, that's growing increasingly harder. I want to see the plan in all this. I want to trust doctors and nurses and all the people that surround us and make decisions about our life. I want to trust that they see US. Not our case. Not our bill. Not our situation. I want them to see US. We are a family that's fighting to stay together. We are a family that loves each other. We are PEOPLE. And lately, I felt treated, but not seen. That makes it hard to trust.

Lately the Lord's lessons have come in torrents and floods, they have involved my children, and often leave me in tears. But I am trying to learn and I am trying to trust. Because they are far wiser and far better than I. Both God and my sons. And the spirit in which these trials are given is one of love and growth, but mostly love. I know my Savior loves me. I know he is closer to my children than I can possibly imagine. And that's the spirit in which I need to receive what He has to give.

Sunday, December 20, 2009

It's Ugly in Here Today

Warning: This is not a happy-go-lucky, feel-good post.

I know it's Christmas, but I am not in a place of tolerance, acceptance, love and openness. Today, I'm angry. Make that livid. If you've vowed to stick with our little story through thick or thin, this would be the part where I'm wearing a little thin.

This weekend we're in the thick of yet another respiratory episode for Ty and the fourth month of nearly continuous earaches for McKay. The inversion has really settled in the Salt Lake Valley and as a result Ty's had a progressively harder time breathing. By Saturday morning, it was obvious Ty needed to see a doctor. Lucky for us, we had our regular 10-day follow up scheduled with the boys' pediatrician to take yet another look at McKay's ears at the conclusion of yet another round of antibiotics. So I called the doctor's office and let them know we would require a double header and loaded the boys into the car.

They immediately hooked Ty up to the pulse oxygen machine where he posted between 88-91. In my mind I pleaded: Please no ambulance, please. After all, letting it get to that point once is somewhat forgivable, but twice? Even I would question my ability to properly care for my child.

"He's borderline," the doctor said. "Let's give him a breathing treatment and see how he responds."

Ten minutes later, Ty's numbers looked slightly better (94-95) and the doc had backed down a bit. "Albuteral treatments every four hours and a steroid pill twice a day for five days. And I want to see him again on Monday."

I can do that. Now for McKay.

As the doctor took out his otoscope I was so ready to hear that everything looked great I about fell on the floor when he said his ears were worse than ever. The antibiotics aren't even touching his infections anymore.

"Now what?" I asked.

"There is one last, intensive treatment we need to try--Rocephin injections," he said. "Two shots, once a day for three consecutive days."

Two shots because Rocephin, in addition to being a powerful broad-spectrum antibiotic, is like peanut butter and they have to mix it with a numbing agent to make it tolerable. The dose is so big and the shot so slow, they break it up into two shots given simultaneously to the backdrop of the most intense screaming I've ever seen McKay do. We got the first dose, I held him on my lap, his arms against his chest. I watched the medicine go in and I wept.

"If he can't clear this infection by Monday, I need to consult with Cardiology about putting tubes in his ears," said the doc. "I've seen McKay change over the past few months and it's obvious the infections have changed his disposition. Couple that with the fact that he has no language, no words yet, and I am very concerned. Both are most likely side effects of the chronic infections."

Yesterday broke my heart.

What is going on with my little men? Everyone hesitates to label Ty's distress asthma just yet, because he had NO asthmatic symptoms until the H1N1 hit. Instead they say he has "reactive airways" at least until he has enough episodes to warrant another diagnosis. Whatever you call it, he can't breathe sometimes and it's scary.

Today, I mustered up the courage to take McKay back for shot #2. I picked and packed an early Christmas present for our trip, trying somehow to make it up to him. But the visit was less than stellar.

Of course, because it's Sunday his regular doctor was not there. No big deal, I thought. It's the nurses who give him the shots anyway. However when the nurse who called us back gasped mid-lobby at the sight of McKay's oxygen tubes, I could feel the fire in my heart ignite.

"Oh my gosh, what's wrong with him?" she blurted out. "He really is so sick. Poor, poor baby."

Really? That's how you react to a parent and child in your office? How discreet. I bit my tongue.

I tolerated her forced pouty face and her continuous expression of the phrase, "poor, poor, baby" through the weight and temperature taking. But by the time I got back to the exam room I could not look at her for fear I would let it fly.

"I just hate giving these shots to little kids. They are so painful."

She needed to stop talking. Now.

I met for a very brief visit with a doctor we've never seen before who then sent the previously mentioned nurse and her I-swear-she-was-12-years-old sidekick back into the office to administer the shots.

I held Mac on my lap again, they both took a leg, counted to three, and jammed the needles into Mac's legs (a small distance from the bruises the shots created yesterday). One nurse pulled up quickly while the other continued to give her shot.

The 12-year-old then shared a choice expletive as she looked at her still half-full syringe.

"I thought it was done, this stuff is so thick."

She walked toward him to stick the needle in his leg again. I pulled back.

"Don't you need to clean the injection site?" I asked.

"Oh, yeah," she answered.

She took out another alcohol swab, wiped his leg in yet another spot, and jammed the needle in again.

I could feel my face getting hot. I went silent and cradled McKay encouraging him to breathe and assuring him they were done now.

"He'll probably be in a lot of pain tonight, you should give him some ibuprofen."

Really? A lot of pain from your incompetence? A lot of pain from the fact he just got three injections instead of two? I thought I might drop her right there.

I am mad. I don't want to be, but I am. And I don't really care if I'm overreacting at this point. It's just all adding up to a little more than I can take.

McKay has started fussing every time I put him in the car. Why? Because he knows he's headed for more pain. He goes nearly nowhere else but to doctor's appointments and it's robbing me of what should be a blissfully giggly toddler. Layer Ty's troubles, a bit of claustrophobia from feeling more cooped up than I'd like, the fact that today was among the very rare times since Nov. 1 that we've been together as a family outside the walls of our home, put it all on top of an already tippy cake, and it's definitely beginning to crumble.

I don't pretend that we're picked on. I feel deeply the "Why us?" game should be "Why not us?" when I look at the big picture of all the care and love we've been able to provide. I think my anger comes from expectations. I expect to feel a certain way this time of year. I expect to have things go our way more often than not. I expect to be able to DO something for my babies. Instead, I feel more than a little helpless today.

So that's it. I'm done. It's uglier than usual today, but it's real. Tomorrow we'll do it all over again and hope for better nurses and a divinely-forgiving baby with a short memory. Until then I invite you to feel a little more in the season and read here about how I hope to be feeling soon.

Tuesday, December 15, 2009


If, at any time, I worried...

McKay was the one in need of protection...

Clearly, I was wrong.
He is King of the Takedown.
Brothers beware.

(Smotha-your-Brotha Laugh Fest, Thanksgiving 2009
@ Grandma Sheri's house.)

Sunday, December 13, 2009


Any time you walk into a children’s hospital with your child, you know your life has the distinct possibility of being forever changed. Whether it’s for an accident, a chronic disease, or a mystery illness yet to be diagnosed, the hallways of those institutions of healing and hope can be a long walk.

I have been dreading our regular three-month cardiology checkup for a good six weeks now. I just had a bad feeling about it. It wasn’t a bad feeling like something was extra-wrong with my babe, just a general annoyance with having to revisit his reality in regular intervals.

I remember the moment we were made aware of McKay’s condition I started an insatiable quest for information, names, connections, explanations, resources and on and on and on. But over the last three months, that part of me has shut down. Yes, I still keep my eyes and ears open, but something has changed and I have turned inward on my babe. As much as I want to give him the best options, the best resources, the best treatment available, I also feel a need to protect him from becoming ‘the sick kid.’ You know the one people stare at but don’t talk to, touch or interact with; the one people either feel obligated to ask about or avoid.

When people ask me about McKay I want to answer with a report about milestones centered on mobility, appetite, speech and all other things oh-so-15-months old. I do not want to assume the interested party expects me to lead with an update on our search for a surgeon, the latest cardiology report, prognosis, or plans. So I don’t. I say he’s fine. I call him a stinker when he’s a stinker. I’ve been more normal with him and it feels better.

Call it denial. Call it going numb. But I needed to change the focus. And going back into visit the cardiologist meant the pretending was over.

The usual weight, height and sat measurements were taken. 27 pounds. 29 inches. 79 on ¼ liter of oxygen. 68 on his own. Growth exceptional, saturations miserable. It was the same story we’ve been living off and on for the last year.

So the visit mostly centered on what’s next. And what’s next is 8-9 more months of oxygen as we wait for him to either take a serious turn south and require some unscheduled intervention or hold steady as tests are run and visits are made to a facility with a surgeon ready to tackle his case. While Primary Children’s touts a respected roster of cardiothoracic surgeons, they are still short a senior surgeon. Word is that the surgeons have met with the cardiologists on some of the more complicated cases such as McKay’s and they have asked that, for now, all Fontan operations complicated with dextrocardia be referred out.

Basically, being referred out means that we get to go shopping for a surgeon. When our card asked if we had preference for hospital, location or surgeon, I just said, “Yes, we prefer you find us the best surgeon.” I asked her to find someone who had done the Fontan in at least half a dozen dextrocardic kids with a good outcome. She said she thinks our best bet may be Children’s Hospital of Philadelphia (CHOP). But maybe Michigan. Or Stanford. Like I said, it’s time to shop.

For now, 2010 is shaping up a little something like this:

March 2010: sedated echocardiogram scheduled at Primary’s to do a full study of McKay’s heart and prepare a study to send out for review to candidate hospitals. (Apparently, many hospitals compete for complicated cases—that may play in our favor as far as getting access to senior surgeons.)

May/June 2010: Make initial visit to selected facility for work ups and pre-surgery heart cath.

July/August 2010: Fontan. Take our show on the road for anywhere between 2 weeks to who knows how long to get Mac re-plumbed and well enough to travel home again. The other monkeys may come for all or some of it depending on the location. I would love to make this some sort of “good” summer memory for them instead of “the summer when mom and dad left us.” I’m going to have to do some thinking on how to make that happen.

So that’s the latest. A lot of sort-of answers, with no concrete solutions. It’s a state of being that is still as maddening as it’s always been. In the meantime we’re just trying to keep Mac as happy and as untangled as possible. He is freight train on a short track and it’s a frustrating journey to watch. I spend most of my day chasing him around trying to give him enough space and slack to be himself. He’s a special little kiddo. I’m glad he’s mine. We will do right by him.

Monday, December 7, 2009

A Little Catching Up to Do...

It's been a great while between posts, but not without good cause. We decided to make a quick post-Thanksgiving getaway to The Magic Kingdom. The entire park was frosted white for Christmas and we'd heard a "must see" for the kids this time of year. Couple that endorsement with the fact that McKay's favorite mouse makes his home at sea level--a fact that gives our heavy breather a fighting chance at a week without the tubes--and we packed up the family car for a good old-fashioned road trip.

After a good day-and-a-half in the car, with one overnight stop in Vegas (which Preston liked just a bit too much) we finally hit the coast and checked Mac's sats. We were ecstatic to see an easy 10-point bump simply from the change in scenery. He stayed at 82-85 for the entire week. It was an easy decision to drop the cords and hit the rides.

The trip started with a much begged-for stop at Legoland. This place is truly heaven on earth for 4-9 year old boys. The place was positively desolate and we walked onto nearly every ride in the park. The boys enjoyed running, pointing and yelling, "Mom, Dad, look! That's TOTALLY made out of Legos!" They must have said it 50 times that day.

McKay was not as into the rides as he was into playing with Grandma and Grandpa who tagged along for the fun and devouring the amazing apple fries the park has to offer.

Did you know shoulder rides are hysterically funny?

Mac has also mastered the art of peek-a-boo. It's absurdly cute.

We stayed until they turned the lights out in the park and then headed to find a fish dinner near the ocean. McKay was tired and cranky and not about to sit through dinner--that is until I walked my cherub about 25 yards to the boardwalk. We sat on the bench and listened to the waves roll in. He calmed instantly. It was a perfect end to the day.

Then it was on to Disney for three days of fun. Disney is always magical, but there is something about taking each of my boys for their first visits. I was glad the getting was good enough to take McKay this year. By 15 months old, both of my other boys had been to Disney twice, Hawaii and many other locations. (Ty redeemed his first frequent flyer ticket at just two years old.) To say McKay has put the breaks on a what was a frequently mobile lifestyle is an understatement. It's true we've found many adventures closer to home, but I felt a sort of strange sense of accomplishment at us finding a way to bring Mac and Mickey together.

And in return? McKay slept through meeting the big man! Oh well, his brothers smiled big enough and bright enough for all of us.

He did, however, get to meet Winnie the Pooh. It was a joyful event to behold.

Preston left every character encounter with his finger guns a blazin'. That little munchkin is personality plus.

All the pent up excitement that so often leads little boys straight into trouble, all the negotiations to try this ride or that, all the packing, unpacking and repacking everyday--it all adds up to one great trip, but not much of a vacation. And there is a difference. But this trip was an important one.

Matt and I shared pressure-free cuddle time with each of our little men. There were moments of just being together. No begging them to get dressed or undressed. No coaxing them into or out of the shower. No eat this now, pick that up, finish that homework. There were moments of pure together time. And that felt good.
As I watched McKay perfect some of his first shaky four, then five, and now six steps in a row in front of Cinderella's castle with Dad's steady hands and watchful eyes always upon him, I realized how big he is already becoming.
He was big enough to sit next to Grandma on the rides instead of on her lap. He was big enough to play, wrestle and otherwise enjoy his older brothers. He was opinionated, fascinated, and all around ran the show.

It was slightly more than depressing to drive nearer to home and watch the sat monitor tell us McKay, once again, needed some help. We'll check in with his cardiologist on Thursday for a more intense evaluation of how he's really doing and what's next. I'm close to nauseous for this appointment for some reason. We'll continue to pray and trust and hope for good news. And once again remind ourselves to take it one day at a time. Because the last few days have been pretty great.

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.

Friday, October 30, 2009

Boo, Boo, Boo

Halloween (which is now a week instead of a day, in case you haven't heard) has been going very well.

Ty had his first piano recital which he did in costume (and which he rocked).

You got to love a six-year old with a deep bow.

We hosted our annual all Hallow's sugar cookie and soup night (which made us all a little more roll than rock, but these cookies are WORTH it).

My Three Musketeers made their debut and proved more shiny and sweet than even their chocolate-covered counterpart.

(I see a future in politics for this one.)

(And perhaps law enforcement for this one...)

But just when all seemed well, the phone rang. It was Friday at 5 o'clock. What could possibly go wrong? The results of McKay's labs from earlier this week were in and while everything seemed okay, the cardiologists today discussed possible solutions to dealing with McKay's ever lowering sats. The consensus? His cardiologist presented two options: 1) Do another heart catheter to explore the possibility of further collateral veins diverting blood from Mac's heart and lungs. Another surgical procedure. Another sedation. Ughh. 2) Put McKay back on oxygen and see if he can't boost his sats into the high 70 percent range and hold it there with the tubes until he's ready for the Fontan (think at least 8 months). Double ughh.

The decision? The tubes are back. At least for now. We'll see how his body responds to the oxygen therapy over the weekend and make further decisions regarding a second cath sometime next week.

The biggest casualty of the night (aside from our false sense of security and complacency) was a new pair of pajamas I cut through the foot so I could thread the tubes in and out of his sleeper. I am paranoid my little toss and turn will get tangled up in the night.

Truly, I just want him to feel better. Little boy blue has given us a couple of good scares in the past few weeks. Let me just say I will never buy the kid a purple shirt--I'm not a fan of the color on him.

Please, please, please Lord watch over my baby and his doctors.