Tuesday, June 30, 2009

Cath Report #2

A few pre-procedure bubbles while we wait to talk to the docs.
Fact: Only babies can make hospital gowns look this cute.

The updates have been few and far between today--I wish I could say I'm sorry, but it would be a lie. We were so busy getting Mac feeling like himself again today and listening to our discharge orders--that's right, we're home!--who had time to post?

The procedure took about two hours and we met with the doc afterward to see some amazing inside pics of our little brave heart. The good news is that everything looked just about perfect--the graft into his pulmonary artery has held its shape, there are no problems with pressures, his aorta or anything that would indicate major problems to come. The only thing the doc could find that might be causing McKay to have oxygen saturations lower than they would like is one large collateral vein.

You can see the nasty renegade in the picture below. The picture is of McKay's chest. The dark line that descends from the top of the picture is the cath. You can follow it until it snakes into a thicker, larger mass--that's the collateral vein that was diverting blood from McKay's lungs. (The twist-tie looking lassos in the middle are the ties that hold his little sternum together and are the result of a previous surgery.)

Okay, are you ready for this? Here is what the same chest shot looks like after they insert a tiny metal coil into the collateral vein. They literally just stuff the piece of metal (which looks entirely like it belongs in a Cup of Soup to me) into the vein until they create sufficient blockage to obstruct flow. Over the next few weeks and months, the metal then attracts the blood to clot around it and form a dam which effectively blocks and shuts down the vessel. Here's the coil:

I know, it makes my skin crawl a little, too. But you have to admit it's pretty amazing medicine.

You know what's even more amazing? A 10-month old who sat before me today with pressure bandages on his neck and thigh, two IVs in his left hand and foot, a cluster of blood blisters where they carelessly removed a taped-down drape cloth after the procedure, whose one free hand still felt as soft as silk and who tried and succeeded in mustering a smile of encouragement for me.

We have to wait a while to see if today's new hardware will be the answer to finding rosier days for Mr. McKay. About a month actually. That's how long it will take the body to react to the coil and reroute blood flow--we hope--through his pulmonary artery and into his lungs this time.

So we wait. And hope. And pray. And leave it up to God and the tiny tank of a miracle we see in our Mac. He is the very epitome of resilience.

Cath Report #1

As if you need the blow by blow, but I'm nervous, exhausted, and fidgety so you're getting an update.

McKay decided to pull an all nighter, refusing to go back to sleep after a 3am bottle. He was giddy and playful, insisting to get out of his room. The entire act would have been rather endearing had it not been the middle of the night. Alas, he won out and spent the wee hours of the morning in between Matt and me smiling at his favorite Little Einsteins while we tried to catch a bit of sleep. Little stinker. :)

We arrived bright and early this morning to check in only to find out they were redrawing our paperwork because the doctor preforming the procedure had been changed. Ummm, excuse me? Apparently the doc we had requested, the doc we had been assured through two previous phone calls from the hospital would be performing the cath on McKay changed his schedule. What to do? If we objected, we could cancel the procedure and reschedule--for over a month out because the cath lab schedule is jammed until then, or we could quickly adjust to the change in plans and go forward.

After talking with the new doc and flat out asking him about the change and why it was made, we felt just a bit better. He detailed the methodology of McKay's cath telling us that his current anatomy requires them to perform the cath through incisions in not only his leg, but his neck as well. Right now McKay just doesn't have the highways necessary to give access to all the locations they need to see during the procedure. So a double cath it is. Poor thing.

We were told they will be looking for anything "that could be making McKay so blue, so early." Right now they are about half way through the three-hour procedure and we are holding tight to the beeper that will let us know when they are ready to let us see him again.

More news soon...

Monday, June 29, 2009


It's not fair to describe the nervousness I'm cultivating in the pit of my stomach tonight as butterflies. I had butterflies on my wedding day. Driving to the hospital to have each of my children. I still get them on Christmas Eve. No. This is definitely not butterflies. Moths, perhaps.

Why the nausea? McKay will spend the day(and possibly night) at the hospital tomorrow having his first heart cath. The cath procedure involves inserting a thin, flexible tube (catheter) into the femoral artery high up inside McKay's chubby little thigh. The catheter is guided up the vein toward the heart. The cardiologist uses X-rays, called fluoroscopy, to help visualize and guide the movement of the catheter to the desired locations within the blood vessels and chambers of the heart. While inside the heart, several things may be done to help evaluate the heart structures, as well as the pattern of blood flow inside the heart and nearby blood vessels, including:

  • Drawing blood samples from each chamber and each blood vessel, to measure oxygen content.

  • Making blood pressure measurements inside each chamber and each blood vessel.

  • Injecting a contrast (dye) into the catheter and recording the images as it flows through the heart.The moving pictures are saved, enabling the cardiologist to review the data after the procedure.

  • Inserting tiny coils to block blood flow from spontaneous and unwanted collateral veins which may have developed around the heart.
I know the procedure seems a small thing in light of McKay's history, but for some reason the thought of how they perform caths just gets to me. Seriously, who thinks up this stuff? I'm not sure, but I am glad they contributed their genius to developing the mind-bending, life-saving treatments that will help to keep Mac in the clear.

Please say a little prayer for our McKay and for his doctors that all will go as planned. Truth be told, we're hoping for a day full of thoroughly boring news!

Thursday, June 25, 2009

The Sunny Season

Ahhh Summer. You feel good under our feet, blowing through our hair and warming the fuzzy part of our necks. You bring ice cream and missed bedtimes and shivers getting out of the pool. You are sun baked towels. Fresh cut grass. Chores that can wait until later. You are full of smiles and looks that linger between a husband and wife, now father and mother, who know this is just about as delicious as life gets. Hail to the sunniest season of the year, and of our life together, so far.

Monday, June 22, 2009

Not Me! Monday

(This picture has nothing to do with this post, but I had to share. He is a complete ray of sunshine. And yes, those are his pajamas--I would never let my kids play in the backyard before they're dressed for the day. Not me!)

I am soooo independent. I never rely on others to make my life possible. I would never ask my darling sister and bend-over-backwards mother-in-law to change their lives on a weekly basis to shelter, feed, care for and otherwise nurture my little ones. Not me!

I would never ask this of them because I never (and I mean NEVER) need an escape, a playground, a something else to think about in order to refuel and remember why I adore being a most-the-time mom most of the time. I would never think my babies' faces look just a little sweeter, a little less conniving, and a lot more irresistible after just a few hours away each week. Not me! I could never leave them, not even for a second to someone else's care who might teach them that there is more to the world than mom's smothering embrace.

So today it would be a totally irrelevant waste of time to thank what seems to be the multitudes of people in my life who surround and buoy up and take over when I need to find some sanity, adventure or carve out a little story of my own now and again. I would never thank them for not making me feel guilty about it either. Not me! I can do it all by myself. (Ha!)

Sunday, June 21, 2009

Run, Run, Run, Run Runaway

This weekend was the run. THE run. The Wasatch Back. The Ragnar. You can call it whatever gets your heart pounding, it all boils down to 12 team members. 188 miles. Two days. Run. Eat. Rest. Repeat.

The entire experience is part silly, part sublime. And every step is pure therapy. Sleeping in the cab of a truck, eating spaghetti off of paper plates, showering in a hockey team locker room; it all combines to provide moments of solace, triumph, self-doubt, and ultimate release.

My training and a week that pushed me back into the fetal position emotionally, melted together into a goo that fueled personal records on some cathartic runs.

This was my first of three runs during the 30 hours and 15 minutes it took our team to cover the near 200 miles of the course marathon style. I fretted over this climb because it was something I had never done before. It looked ugly. On paper, it looked nearly impossible. But it wasn't. Instead it was a joyous climb on a gorgeous day. I was surrounded by wildflowers and friends that are fast becoming family cheering me on. I surprised myself. I would do it again. Just for fun. Really.

By 10 pm it was time for my second run. It was a shorter run, just 4.2 miles over the rolling hills that lead to East Canyon. I wanted to kill it. I wanted to feel sweat on my face and a little burn in the early chill just after sunset. I wanted to run out the anger and frustration and sadness I've felt this week. This strange stew of ambition and surrender to the sport combined for a new personal record. 4.2 miles in 28:14. That's a 6:43 pace--one I normally couldn't pay my legs to run in the flats. But somehow it not only felt possible, but comfortable. Who is this chick? Not sure, but I think I'll invite her to stay.

I was overwhelmingly proud of a couple of girlfriends rookie to the race and one to running in general. They battled it out, faced the fear, overcame the challenge and felt the satisfaction of a job well done. They were a great example to me of making things happen, accepting opportunity in the moment it presents itself and the wisdom in just. putting. one. foot. in. front. of. the. other.

I am tempted to connect the dots. To dive deep into the obvious metaphors that are aching for me to explore. I'm not going to do it. This is what I know: Climb. Run. Battle. Refuel. Get up. Show up. Do it again. And again. And again. Until the impossible is accomplished. Look back on it all and remember that you could have never been part of the party if you hadn't signed on for all the hard work. Today, tomorrow and the next; Just. Keep. Moving. Forward.

Wednesday, June 17, 2009

Tethered Down and Cath Bound

Some days just don't turn out the way you hope. And when this is the view out your front door at five o'clock, you know it's been one of those days.

McKay's check-in with cardiology came none too soon according to his doc and his sats. Little Boy Blue's oxygenation has been steadily declining over the past few months and point by point he's earned his awful green tanks back. He bounced between 69-74% oxygen saturation today at clinic after a 77% three weeks ago at his pediatrician's office. That's a big thumbs down for a kiddo who should be hovering in the mid-80's post-Glenn and still has over a year until his Fontan. Yes, the tanks and tubes are back to be used "as much as possible" with a wiggly soon-to-be-on-the-move 10 month old and they brought a more permanent friend, a zealously labeled pediatric oxygen concentrator with them. It's loud and obnoxious and does not go with the decor. GO HOME. It looks like I'd better make peace with it, however, because they all may be overstaying their never-were welcome.

(If any of you experienced heart moms out there know any tricks for how to assure roly-poly oxygen-wearing babes don't get tangled up in the tubes at night, please share. Tonight I just ran the tubing down the back of his pjs and out the bottom thinking it would be harder for his neck to get tangled up that way--thoughts??)

More concerning is the fact that his echos (like an ultrasound of his heart) reveal nothing that would indicate such low sats. No valve leakage. No squeeze issues. All GREAT news, but a continuation of the mystery nonetheless. McKay's cardiologist believes he may have some rogue vessels around his heart that are trying to create detours for the blood flowing into his lungs. Basically, we all have more minor blood vessels throughout our bodies that are perfectly content to be part of a more secondary blood supply to organs and tissues. But when an organ or tissue is not getting as much oxygen as the body would like, some of these vessels get pushy and self-important and decide to take things into their own hands. Some of these vessels can grow quite large and divert enough blood from its normal course of flow to create some pretty major complications. Ironically, these vessels that are trying to help the body can end up doing far more bad than good.

So what to do? The only way to truly know if that's what is happening is a trip to the heart cath lab. Boo. I have truly been dreading this almost inevitable part of the heart experience. We successfully avoided the cath lab prior to McKay's Glenn because, I firmly believe, I begged God to please not to make him (read: me) have to go through it. So instead we got an MRI. Much better in my book. I know it seems silly in light of the surgeries McKay has had for me to wince so much at the cath lab, but it just gives me the willies to think of that small tube snaking its way from the artery in Mac's chubby little thigh all the way into his perfectly ingenious little heart. Yuck. Alas, I don't get to choose these things and McKay is clearly in need of some interventions so we'll be preparing for a trip to the cath lab in the next couple of weeks.

So tonight I'm sulking a bit. Okay more than a bit. I stopped at one of my favorite bakeries (and there are many) on my way home from the hospital today because news like that just needs a cookie. Sadly, the news doesn't taste any sweeter tonight than it did earlier today--I even had two cookies just to make sure the first one wasn't a dud. No luck. Blah.

I know this feeling won't last. The sun will come out tomorrow and Mac will most likely take his new situation in stride. He is a marvelous work and a wonder. He's also the toughest cookie I know. Here's to sweeter days ahead.

Monday, June 15, 2009

Not Me! A Study

One thing about starting a weekly tradition--blogging or otherwise--it definitely shines an obnoxious spotlight on how quickly time is passing and how much you are (or are not) accomplishing in said time frame. This week is no exception. Not Me! Monday is here again.

I had a strange Not Me! out of body experience today when the nicest phone survey person EVER called from the Utah Department of Health. We recently received a packet inviting us to participate in the National Birth Defects Prevention Study. It arrived in a bright blue folder made of flimsy stock featuring a blue-toned daisy on the cover centered right under the word "defect." The contrast of the particular variety of flora usually reserved for discussions on feminine freshness under that ugly word made for a strange combination. I cringed. Me? Participate in a defect study? Ughh. It was not a reality for which I was willing to accept eligibility. Not me!

Why do we use such an ugly word to describe a perfect little boy who came with some unique plumbing? Is it really a defect? Sure, his anatomy doesn't look or work like yours and mine, but it is evidence of the body's strong will to find a way when there is none. Whatever messed up information my DNA passed on to his little and rapidly dividing cells so many months ago made for more than a slight variation on normal--generic--mundane. However, his body's will to survive was so strong it compensated in many, many, complicated ways to make up for what his heart could not do. I think it's all pretty ingenious really. His body that is. So as I continue on with this story I prefer to think they were calling to study the ingenuity of my son's anatomy. Yes. That's much better.

I answered the world's nicest phone survey woman with my consent to participate in the study. I soon learned that it has been ongoing for 11 years now and is focused on narrowing in on the potential causes of birth defects (read: anatomical ingenuity). I answered, "Yes" "No" Never" Always" "Once a Week" "Twice a Month" and on and on and on for almost an hour.


Aside from the expected litany of inquiries about whether or not I or the baby's father (I find it amusing that throughout the entire hour they dared not ask if I were married, divorced or single--seriously you just sent me a packet telling me I am in a computer somewhere labeled as having a defect and you might offend me with something so personal as my marital status?) had engaged in any sort of recreational drug use, drinking, or applied pesticides as a vocation, they asked some suspicious questions about cereal and drinking water and food groups I had never considered.

For example:

Q: For the three months prior to and throughout your pregnancy did you consume cereal? What kinds? How frequently did you consume each kind?

A: I rarely stopped eating cereal. It's all that sounded good. Cocoa Pebbles. Cheerios. Shredded Wheat. Life. Mini Wheats. Five times a week. Twice a week. Three times a week. Twice a week.

Q: For the three months prior and throughout your pregnancy did you consume milk on a regular basis? Skim milk? Whole milk?

A: Yes. Skim. As if in an IV--please reference the above answered question.

Q: For the three months prior to and during your pregnancy how many glasses of drinking water did you consume on a daily basis? Filtered water at home? Water away from home? Bottled water?

A: Because I do not keep track in any written way of all my beverage consumption, I guessed. But it's a lot of all of the above. Who doesn't?

I didn't really get weirded out by all the information I was sharing until she started using McKay's name. I never shared it with her, but she knew it. I didn't like hearing it on a stranger's lips; and especially not in this context.

Has anyone out there participated in something like this? When McKay is president is my participation going to come back to haunt him? Of course, we were assured of complete confidentiality--right up to the point when she let me know the next phase of the study would be completed when my cheek cell sample collection kits arrived in the mail. Hmmm.

I'm torn. Do I want the research to march on and find the cause and cure for all of the craziness I see in the bodies of the tiniest among us each time we visit Primary's? Yes. Am I 100 percent confident all of this information will be used for good and true purposes? Mostly. Am I concerned anything I share about my cereal loving ways could come back to haunt us as far as insurance goes in the decades to come? Very.

So this Not Me! is about how I would never be selected to chat about what I could have done to precipitate this challenge for my baby. No, not me. Not after every doctor I've seen up to this point told me this was just one of those things--nothing could have been done to cause or prevent it. I couldn't have been made to feel that drinking too much water or eating fresh fruit on an above average basis could result in consequences on par with drug use and inhaling pesticides on a daily basis. No, not me.

The truth is life is fragile. Life is miraculous. Life is not a gift we give our children, but a gift we accept from God. And no study, no matter its success in figuring out if all of the things we are putting into and around our bodies are now conspiring to backfire will ever get close to uncovering His greater plan.

I firmly believe we need to get to the bottom of anything that makes our children less than whole, or well, or delirious with the joy of being alive. That's why I answered those questions. That's why I'll probably insert that sterile little stick into the chubby little cheek of my prince when it arrives in the mail next week. But I'll do it right after I swab mine. And Matt swabs his. Because ultimately he is us and we are him and we are all in this together. And the truth is when it comes to getting to the bottom of the lessons offered in the big things life puts us through, I'd do better to quit saying Not me! and start trying to understand Why not me? I think we all would.

Tuesday, June 9, 2009

Not Me! Monday

This Monday's Not me! confessions come from a bit of a different place than weeks past. I hope you'll indulge a more reflective rant. Today I cannot believe how unbelievably grateful I am to be living my life. I feel as though the trials others are going through around me are reaching a frenzied pace. It's as though the days of stubbed my toe, forgot my wallet, out of gas hassles have been exchanged for the less welcome cancer diagnosis, failed adoption, unexpected death in the family variety. But would I question what is going on in the world? Not me!

Would I dare say the refiner's fire is becoming hotter and more consuming? Not me! Would I speculate that there are lessons, infinitely perfect and wholly holy lessons, that only come through great personal trial? Not me! Would I say with utmost surety that such trials evidence to me that God is not turning His back on the world, but instead pouring out His love in ways only as strange and misunderstood as the life He came to live? Not me! Indeed, His ways are not our ways, but His love is perfect and I know He wants us to feel of it--in its most tangible and powerful form.

He sends that love through trial. Through service. Through parents. Through entire, once hidden communities of people who choose to rally around each other. People whose words you rely on to wash over you on days you feel most scared or alone and whose words somehow make you feel new again. Strong again. Loved again.

I once used to say in a half-joking, I'm-oh-so-untouchable way that I could take any trial God sent me, "Just so long as He didn't start messing with my kids." I probably said that exact phrase out loud at least a dozen times to different people in my life. I don't challenge God in that way anymore. And, ironically, every night my most fervent prayers plead for Him to keep my children safe; even as though they were in the very palm of His hand. The arrogance of my "Don't lay a hand on them" threat has become a "Please lay thy hands on them" plea.

So this Not Me! is about how I, in all seriousness, must remember how I feel so overwhelmingly grateful to have been custom built for my life. My challenges. My joys. My heartaches. My truth. At times it leads me in and out of messy places and dark corners, but always back into a light of warmth and love. I am truly overwhelmed by the blessings that are mine.

Trade places with you? Not me! Well, maybe for a minute if you needed a break, but I'd take my life back, the good, the bad and all that's in between, in a heartbeat. We were made for each other.

Monday, June 8, 2009

You've Gotta Move It

This is how Mr. McKay prefers to spend his days:

Sitting in one spot surrounded by his favorite toys.

This is the trouble Mr. Mac has found himself in lately...

He is currently being tag-teamed by physical and occupational therapists determined to teach him how to move his little hunk of love around on his own.

It's hard work that makes him question how he got into this mess.

It also makes him more than a little annoyed with me...

Go Mac, go! We're cheering for you. I am so proud of your strong little body and all that it's done for you so far. You have beaten all the odds and now is not the time to stop. These next few months will be tough. You will cry. You will get frustrated. But the next time they go in to fix your little thumper, you will be ahead of the game. You will be strong. You will know how to move. You will want to move. And that desire will help you heal. I cannot express how proud I am of you. You make us all try harder. Keep after it buddy! This is just the beginning; the world is yours.

Monday, June 1, 2009

Not Me! Monday

As I sit here wondering what embarrassing, oh-so-real-moments to share from this week I am certainly not listening to (and loving) an earnest evening thunderstorm as it sheets rain down my perfectly polished windows. I am also not enduring the I-told-you-so smirk of a husband who thinks windows should only be cleaned yearly sometime in drought stricken mid-July so as to get maximum value. ~Sigh~. I really don't mind. Our perfect world view lasted for nearly four full days and if perfection must end (and it really must) the sights, sounds, and smells of an honest to goodness warm weather downpour is surely the way to go.

I think my biggest Not me! confession of the last week is what I did not put into my body over the last weekend. My nutrition rebellion went something like this:

Friday: Did not pick at a generous bag of Red Vines and an odd collection of broken chocolate chip cookies for most of the afternoon as an appetizer for an ice cream party later that evening.

Saturday: Did not wake up and run 10 miles so I could not use the exertion as an excuse to down a berry and Oreo shake for lunch, two oatmeal butterscotch cookies and vanilla ice cream cone dessert later that night with one movie night Popsicle to follow.

Sunday: Did not show visible relief when Matt countered my claim it was Fast Sunday, but instead the 31st of May--the perfect reason to continue the sugarfest with some divine blueberry pancakes drenched in real maple syrup from a gifted tree in Vermont. Mmmmm. I love breakfast. Good thing I did not eat three more cookies before church, and two pieces of pumpkin chocolate chip bread for lunch. Not me! And with a day bathed in enough white sugar to put most into a coma, I would certainly not end it with some made-from-scratch insanely butterific triple chocolate brownies drenched in homemade cocoa-rich butter cream frosting.

Monday: Did not wake up and literally close my eyes for the weekly reality check to discover there was now 1.7 pounds more of me to love. And, somehow, I did not regret it!

Today, I'm definitely not thinking about getting back on the wagon, but I am considering running to catch up with it! Oh well, a good weekend binge is worth at least a month of responsible nibbling, right? Sugar fiend? Not me!