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.

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.

Howling at the Moon

These days people are obsessed with vampires. Supernatural beings that turn into blood-sucking villains when the sun goes down. Me? Not so much. I am far more frightened by a 14-month old that turns into a newborn at the stroke of midnight. He’s literally sucking the life out of me.

I realize that mothers complaining about how little their children sleep is as old as Adam and Eve. And I KNOW she complained. After all she had to mother the human race while camping—ughh. I’m not after your sympathy, just your advice. Crying it out is NOT working. He has an especially sad and violent cry he only uses at night and if we let him go too long I prefer not to turn on the light because I know how blue his plump little lips will look. Not only that, but he can go for well over an hour and then continue the rest and cry pattern until dawn when he somehow turns all babbles and smiles as he patiently waits for us to liberate him from his crib. What gives?

The only thing that gets McKay back to sleep is more milk. I usually ration it 3-4 ounces at a time because I know he’ll be up two or three hours later wanting more. Is it really possible that it takes such frequent feedings to satiate this 26-pound hunk of love? I’ve tried giving him full bottles, but he still wakes. Seriously—HELP!

Matt has stepped in lately and taken the first waking of the night and it has helped tremendously. Only now when Mac has a particularly bad night I am out of practice and more tired than ever. I’m kind of beyond trying to solve the problem and just trying to be grateful at 2am that I have a cherub to wake me at all. Have you had bad sleepers? Did they grow out of it?

You’d think with my third I’d be seasoned enough to figure this out, but McKay is taking me through a series of firsts all his own. Thanks for letting me vent. Things will look rosier once an acceptable hour for a nice cold Diet Coke arrives. I just can't bring myself to pop the top before 10am :).

Needed at Home

I just wanted to share this remarkable young man with you. He is the son of a partner at Matt’s law firm. We spent some time this past year at Primary Children’s together. (Sadly, they were there far more than we were.) His father is an incredible man who constantly lifted us even when anyone would have excused him for being in a deep ditch of his own.

Life changes in an instant. For Chad, it was a check up to treat what seemed to be a simple sore shoulder that changed everything. Hug the kids in your life—the big ones and the little ones.

Read more about Chad here.

Not Me! Monday

I’m a decent housekeeper. I’m not perfect, but respectable. On a scale of Martha Stewart to the hoarders on Oprah, I’m about an 8. (Excluding my bathroom.) It’s a good thing too, because McKay loves to put EVERYTHING he finds into his mouth.

McKay’s penchant for exotic snack selections has turned me into quite an expert at the finger sweep. I’ve fished out paper, toys, even a leaf that drifted down onto his high chair tray during a picnic this summer and was promptly sacrificed to his adventurous appetite. Remember the toy he managed to eat and nearly choked on when he was still a toothless six month old? He chews faster when he sees me coming toward him rubbing sanitizer into my hands because he knows his latest meal will soon be extracted. It’s both hilarious and scary.

That is why I did not COMPLETELY LOSE IT when we found McKay nibbling away on something horridly unacceptable at a friend’s vacation home recently.

We arrived late and as we went about the house turning on lights and getting the boys settled for bed, McKay was exploring his new surroundings with joyful abandon. After five hours in the car he had caught a second wind and was unstoppable.

Matt and I were mid-conversation when we turned to look at McKay and identify the unnatural crunching sound that was coming from his direction. Sure enough he had all five of his teeth hard at work on something yet to be discovered.

Matt told me he had this one and walked quickly over to Mac to pull out whatever toy he was nibbling on now. Only it wasn’t a toy.

“Are you kidding me? Are you kidding me?” Matt kept repeating.

I ran over to see if he needed some help.

“What is it this time?” I asked.

“You don’t want to know,” he said. “Let me just say that I’m pretty sure he still has a wing in there.”

“WHAT!?!” I shouted as I thrust my index finger into McKay’s mouth attempting to extract whatever was still in there.

“It was a cricket. A big, brown cricket,” Matt said.

I felt myself get nauseous.

“You mean the kind the seagulls ate?” I asked Matt. “You mean the kind people on Survivor refuse to touch until about day 32?”

McKay just beamed and continued to gnaw at whatever remnants were still embedded in his voluminous cheeks. Honestly.

Leave a known scavenger alone long enough to forage for disgusting things to eat? Not me! Feed my children bugs? Not me! Feel as though I might hurl every time I think of it. Yes. That last one is definitely me.

H1N1 Update

I just got home from taking the kids for the H1N1 vaccine. Here's what you need to know:

1. The lines are LONG--Our regular peds office does not have any of the vaccine and I was advised to get McKay vaccinated asap so I had to visit the Health Dept. clinic--and so was EVERYONE else.

2. Once I arrived, nurses there advised against vaccinating my 4- and 6-year olds with the nasal spray because it contains the live version of the virus and could pose potential harm to McKay.

3. They would not approve me for the vaccine even though I am the mother of a high risk child. If the baby is older than 6 months, mom gets nothing until the next round of vaccine is released.

4. We get to do this all over again when the injectible form of the vaccine arrives in enough quantities for adults and older children. They told me pregnant women are the next priority. If there's any left after that, healthy adults can get in line.

5. The H1N1 vaccine is a two-part vaccine for children under 9 years of age, so McKay and brothers will have to go back 30 days after the original dose to complete the vaccination. This was news to me as all the reports I heard said it was a one shot deal. For adults, yes. For kids, I guess not.

If you are considering the vaccine for your family, I thought you might like to know!

Just a bit of a soapbox if you please...

I am of the opinion lately that people spend far too much time worrying about what they (and those around them) do or do not deserve. What is or is not fair. Who should have and who should have not. Frankly, I’m sick of hearing about it.

I mean who really DESERVES anything? Do you deserve to be rich or sick or poor or well liked? Do you deserve to live in a certain neighborhood, drive a certain car, wear certain clothes? Is it fair that your business is successful while others hate their jobs? That you are able (or unable) to have all the children you want? That your marriage is happy or un-?

The truth is none of us have anything except by the grace of God. So I wonder why we don’t all start acting with a little grace ourselves.

I hear all of the chatter and bickering and round and round and round again about healthcare and I want to scream—Why can’t we all take care of each other? Isn’t that the most decent thing to do? Isn’t that the most Christian thing to do? But instead it becomes a question of who deserves coverage, who deserves quality healthcare, and fear over whether or not me allowing you access to my doctor means less healthcare for me.

This next part may be a little scary to hear, but it’s Halloween so I’m sure you’ll forgive me. It is my firm belief that we are all one job loss, one sick child, one unexpected accident away from being on the other side of this debate. And all the talk about the “others” will become a mouthful of humble pie as we begin to talk about “us.”

I don’t have all the answers. No one does. That’s why we all have to talk instead of shout; create solutions instead of roadblocks; remember the innocents that are caught in the middle of all the chaos-spewing pundits; realize we are all closer to needing, really depending on, a smart solution than any of us would like to admit.

For many of us it was our good fortune to be born into circumstances that have afforded an easy life where much is taken for granted. For others, the security that comes with having the most basic of needs met and the most human of fears allayed is nothing but a dream. It is our great challenge to realize we are all basically the same. To drop the pride and fear that separates us and dig in to do the right thing—for each other. I am convinced that one subtle shift in attitude could change the world and the way we live in it. Naïve? Maybe. Worth a shot? Absolutely.