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.


The Simmons Family said...

The oxygen cord has become our best friend, but it took some time to make peace with it. I realize now, it's not going anywhere :(.

I'm sure McKay isn't nearly as bothered by it as you are! It still stinks though.

I have asked all the cardiologists about the long term effects of Owen's sats being in the high 70's (off O2, the low 60's) with NO clearcut answer.

Glad you found your kids the H1N1 vaccine.. we got round one and are ready for round two!

Lisanne said...

Oh Mindi you are a trooper! Maybe McKay and Scotty should get together! He isn't headed anywhere either!

Meredith said...

Wow, I don't know what to tell ya'. We'll be praying for you like always.

Jen said...

so no worries on the talking thing. I think our boys are a month apart. Sam will be 14 months in 2 weeks. He only says one word. It is da da. He just screams. I think Mckay is right on track!:) You are in our prayers.
Jen Reeve

Jenny said...

Aw, Mindi. I can't stop thinking about you since I read this yesterday. I don't have a lot of experience in most of your little problems you mentioned but I have done the ear infection thing. It is horrible! Probably one of the big reasons why McKay is not much of a sleeper. Stockton had them horrible, followed by horrible diaper rash from the medicine. We got tubes at 10 months and he NEVER got one again. Is that an option for McKay? Surgery is not ideal for a sensitive little heart like his but those infections have to be really making him grumpy and I would guess you may be a little grumpy as well:(. Lots of love for you!

Emily said...

You and your family are simply amazing. I hope and pray that answers come soon. Who knows: Maybe one day he'll just start talking in sentences. Please know that we are thinking about you and your sweet little guy!

jaci said...

We are thinking of you Mindi, and hope you will get some answers soon for McKay! You are such a good mom to him, he is so very lucky to have you!
So good to see you the other night!
Love, Jaci

Lisa Curcio said...

The three of them are sooo cute together!

It is such a odd feeling when we see the difference between blue and pink. The change to blue is usually so gradual we don't even see it, but the pick is such a huge fast change we notice it in the blink of an eye.

I am so glad to hear that you were able to get the h1n1 vaccine. I am so concerned for the mothers of Heart babies who are not vaccinating, or are not able to get it yet.

I'll be praying for your little guy.