Tuesday, March 23, 2010

Cross It Off the List

Our knees were knockin'.
Our fingers were crossed.
And today we got two thumbs up on a perfectly good pair of ears.

It seems that allowing sufficient time to pass post-tube surgery and RSV fiasco, in addition to putting McKay through two courses of ear drops, was just the thing our little man needed to jump start his ears.

His ENT signed off on normal-range of hearing today and asked to see us in one year. Ahhh. One FULL year.

That's not to say we don't have our work cut out for us catching Mac up on the language delays he likely suffered from nearly five months of constant ear infections and fluid on his inner ear, but that seems sooooo much better than the alternative. I'm a truly lousy sign teacher.

So if I speak in a slowed, slightly louder than required tone and repeat myself several times when handing you an everyday object (i.e., a DRINK, you want a DRINK, yes, a DRINK), just smile and know that I must love you as audibly as I love my stop-worrying-because-my-ears-are-just-fine-mom Mr. McKay.

Friday, March 12, 2010

And Away We Go...

We knew this day was coming. We've known for a while. We've even chatted about it--casually. "Oh, yes," we'd say. "McKay's cardiologist is looking into the best surgeon for his Fontan. We'll likely be headed out of town for at least part of the summer." We said it like no big deal, could- you-please-get-some-milk-at-the-store kind of talk. Today, what we'd been treating as a far-off likelihood became a bit more real.

When we sat down in the exam room at the cardiology clinic today we reviewed our list of questions with each other. Yes, make sure and ask about that. Please don't let me forget to mention this. Then our petite and powerful cardio angel came in the room and started with the what's what. We shut our mouths and opened our ears.

McKay's echo from January looks fine. Heart function is good. Valves look great. But there were some concerns with his bubble test. Bubble test? Did I know he had one of those? Do I know what that is? Apparently while McKay was sedated for the echo, they injected a vein in his arm with a saline solution that they then watched circulate all the way back to his heart and lungs.

The saline tends to carry tiny bubbles, hence the test's deceptively innocent name. In a good bubble test all of the bubbles end up back in the lungs because that is what the Glenn procedure (McKay's second surgery) is designed to do--return all of the blood from the body directly into the lungs to be reoxygenated. However, in McKay's case a good portion of the bubbles also landed in McKay's heart. Not good.

Not so good because it means that "blue blood" or blood that is oxygen poor and has not yet been reoxygenated is mixing heavily with "red blood" or blood that is oxygen rich because it has just been reoxygenated in the lungs and is now in the heart ready to be pumped out to the body. This mixing creates a diluted blood--blood that is not carrying all the oxygen it should--and that is what is being carried out to McKay's body.

In a sense he's like a car trying to run on watered-down gasoline. It'll run, but it will also hiccup and not perform to its full potential. The likely culprit in this unwanted mix up is another pesky collateral vein--just like the one he underwent a heart catheter to coil off last summer. The cardiologist suspects that this time the vein has formed at or near where his superior vena cava and pulmonary artery were grafted together during the Glenn. Again, the body instinctively knows that blue blood, in a normal anatomy, should go to the heart first, then to the lungs and then back to the heart to be redistributed to the body. But the surgeries McKay has undergone are all in an effort to avoid blue blood returning to the heart at all because McKay's half a heart does not have the anatomy to separate the used blood from the refueled. Oy.

So we're headed to the cath lab again. The docs will expertly navigate instruments too small to imagine, into places too scary to think about, to resolve problems I can barely wrap my brain around. They will do it. And they will do it well. That's the first item of business.

Secondly, we were presented with several names and hospitals that our cardiologist considers candidates for Mac's Fontan. The consensus is that McKay will benefit most from an extra-cardiac fontan rather than the lateral tunnel option. This means that they will graft a conduit from the inferior vena cava to his pulmonary artery around his heart, not through it.

Our best, most experienced option for this procedure is a Dr. Spray at the Children's Hospital of Philadelphia (CHOP). Soon the images from McKay's latest echo and the results of the cath he'll undergo in the next few weeks will be zipped across country to this man who will then evaluate the info and schedule our sweet babe for his first cross-country jaunt. He may decide to have Mac fly out for a pre-Fontan cath at CHOP or he may decide the info gathered at Primary's is enough to go on to prepare for the operation. We'll have to wait and see. One trip or two, we'll do whatever it takes to get McKay into the best hands available.

Finally, it was confirmed today that Mr. Mac did indeed receive a generous dose of gentamicin almost continuously during his first 48 hours on the planet. This may be the cause of his hearing woes. We learned today that gentamicin is a vestibulotoxin, and can cause permanent damage to the inner ear if taken at high doses or for prolonged periods of time. But there are also well documented cases in which gentamicin completely destroyed the vestibular apparatus of the ear after three to five days. Mac was exposed for a shorter period of time, so he's in a bit of a gray area. Count on our guy to find the most remote odds and capitalize. Someday that one-in-a-million spirit will serve him well. Right now? Not so much. We're still holding out hope that his next hearing evaluation, scheduled for the 23rd of this month, will bear some good news. At this point, I'm just hoping to get him help and soon so he can begin to tell me what he needs.

On a lighter note, Mac is a complete ray of sunshine. He's begun to do his version of the actions to "Itsy Bitsy Spider" and "Patty Cake." Do you think I can count that as having taught him two of the three signs I was asked to teach him this month? Because he seems slightly less than not at all interested in learning the signs for milk, mom, and more. He's a stubborn one.

Most of all he loves having his brothers dance and run and act like banshees around him. In fact he gets so excited he shakes. It makes me laugh out loud--really. It also makes me realize how full of life he is. And it's a life we're more than happy to help him keep fighting to live. Many thanks and much love for your endless care and concern. Your love and support help us so much on the many days that have seemed more overcast than sunny for us lately. We know better weather is on the way and after we make our way through a few well-forecast storms, life will seem all the more warm and wonderful. xoxo.

Saturday, March 6, 2010

Birthday Bliss

January and February are rampant with birthdays in our clan. After just finding enough places to shove the toys from Christmas, I always grin and bear it when more plastic is unwrapped in the months following. Such is life in three-boy suburban bliss.

Tyler and Preston's birthdays were especially fun this year.
Ty chose to have a mad scientist party-- complete with a working volcano cake created by the ever-talented Aunt Hilary (more about her later).

The scientist was funny and smart and knew just the right things to get a room full of
seven-year olds giggling.

And it's hard to beat melting a mannequin head with acetone as a party game for boys.

Preston's party was all about pirates. We loaded up 15 kiddos and hauled them all down to the Discovery Gateway Children's Museum to run amuck.

It went surprisingly well. But I guess when you not only give permission, but encourage five year olds to swing swords and shout like a pirate, things usually go your way.

And of course, there was another fabulous Aunt Hilary creation to devour.

Birthdays really are the BEST.

**More on Aunt Hilary and her yummy, yummy cakes (they actually taste as amazing as they look--made from scratch with the best of everything you always talk yourself out of buying): She just opened up a baked creation business called ICED~so you can get fabulous cakes now too! Contact her through Facebook or via email: iheartcupcakeSLC@gmail.com and let the party begin!**


McKay has a velour leisure suit.
I guess all of his clothes are leisure suits. Because most everything he does is, you know, leisure.

It's blue. And soft. And fabulous. Just like McKay.

My grandfather wears velour. And I love it.

Why is it that velour is so perfect for men until a certain age and then after a certain age, but not so much in between?

Just another of life's little mysteries I guess.

Wednesday, March 3, 2010

The Latest

I've tried to begin this post at least a dozen times in my head. But things are messy in there these days, crowded. Good crowded--like when you have all the people you love in the same room--good, really good. But crowded.

I feel like we've been to a bajillion doctors appointments since the RSV shock. In reality, it's only been four (that's close to a bajallion, right?). The good news is the Synagis soundly fought off the RSV from Mac's little lungs. The virus hit his nose and ears hard, but created just a few days of a superficial, nasty cough in his chest and poof! it was gone. I guess those painful liquid gold injections of Synagis McKay puts up with and we fight with the insurance over six months out of the year proved their worth.

I couldn't be more grateful for us or more incensed for others that this medicine isn't available to every baby. As I watch my friends' and neighbors' tiny babes hospitalized by the dozen and then watch them bring those children home to deal with the asthma and weakened systems that often haunt these kids for years to come, I can feel myself screaming on the inside.

There is something terribly wrong about having the means to prevent the ravages of RSV for every single little one out there, but setting up a system where only the sickest of the sick can get it and if even if they can, they must pay anywhere from $2700 (what we paid last season) to up and over $4600 (what we paid for last month's shot) to get it. If you have to turn this political--and maybe that's the problem to begin with, I guess you'd call me a socialist, a bleeding heart, or heaven-forbid a liberal, but it's just wrong, isn't it?

We are fortunate to be covered by a plan that has been more than fair to us and employment that has been consistent, but many are not. Not because they don't want to participate, but because they are shut out. Too sick for insurance. Which means too sick for healthcare. Insurance is NOT healthcare. The system is BROKEN. And it's never anyone's problem until it's your mom, your spouse, your kid or yourself who becomes the poster-child for arbitrary, inhumane decisions in the name of fiscal responsibility. What about social responsibility? Ethical responsibility? Plain decency? I'm done.

RSV scare averted, McKay moved on to more mystery and excitement. At his ENT follow-up, post tube surgery, we discovered McKay's hearing loss may be more profound and more permanent than earlier testing may have indicated. Let me be clear--he can hear something. But when sound drops below a certain level, he seems to hear nothing. That may explain his affection for the loudest, most obnoxious plastic fiascos in the house. It may also explain his perfect contentment with watching a movie on mute. My heart hurts.

Of course, the doctor is trying everything before outfitting our little man with hearing aids. We're on another round of eardrops to make sure there is absolutely no residual swelling from either the tube surgery or the RSV that promptly followed. Apparently that could throw off the tests or impede his ears from responding as they should. But the suspicion and the irony is that the ENT thinks McKay may be the recipient of a rare side effect known to be associated with one of the strong antibiotics he was given following his second surgery. Keep him alive or chance a long shot at hearing loss? Of course, there is no choice.
At the end of the month we'll go back. He'll be tested again. And I'll beg, plead, make-a-deal with God for a different result.

I've had a week to process the prospect of a kid with additional needs. Needs that would require me to learn new skills, enter into a new world of learning about ears and hearing loss and what that means today, tomorrow, long term. I've had a week to think about what he can and can't hear. All the games of patty cake. All the gonna-getcha chases with me clapping my hands at his heels. He squeals and laughs and hears at least well enough to act just as you'd expect. But then there are all the lullabies. All the whispers of, "I love you," and "I know, I know, everything is going to be okay." Did he hear that? I really need him to be able to hear that.

Now, after a week, I realize most of my worries have been just that--worries about me. I have centered on what I need. What I want for him. What I think is fair. Yes, I am selfish.

But I'm ready today, finally, (I think), to focus on what is and prepare for whatever is to be for McKay. Heart, fine. Ears, fine. A lifetime of being a complete hero in my eyes, already done.

There is still much to be determined. We feel optimistic that a few weeks from now we'll be able to chalk up the failed tests to McKay's flare for the dramatic. But until then we'll start to learn and prepare and make the best of what is. I think I need to teach him the sign for Rockstar--because he is definitely that.

Most importantly, I feel assured that whatever he can't hear us say, he will feel. And feeling your way through life is really the best way to navigate after all.