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.

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.

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.

Takedown

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.)

Timeline

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.

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.