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.


wylie said...

You wrote, "My heart hurts." My mother heart hurts with you. I will begin pleading with you in McKay's behalf also.

Kyle and Alli said...

Oh...must there always be something new for Mr. McKay??! I will add my pleas in his behalf for increased hearing at the end of the month. In the meantime, I know that McKay feels more love and joy from your family and his far away friends than we probably ever realize!

The Simmons Family said...

Oh McKay is just wanting to keep you on your toes. Even if he can't hear everything.. he knows.. he feels (like you said). We'll be praying for you buddy!!

jaci said...

I love you Mindi! Everything is going to be ok.

Becca said...

So sorry about the hearing! Hopefully it was the RSV. We are hoping that Ellie's last scan was affected by the virus' she had a week earlier. We had another MRI today, so we will see. Good luck Mr. McKay. I am glad to see you recovering.

Becca-Ellie's mom

Lisanne said...

You are amazing! Hang in there and we will pray all goes well for all of you at the end of the month!! So glad to read his RSV didn't get any worse!

Dianne said...

You are SO LOVED Mindy!!! May the Lord bless you and your family with the strength, love, comfort and courage along with happiness. You have a very valiant son. You are stronger than you realize. We pray for the best.

Meredith said...

He will hear things in his very special heart that the rest of us will never hear with our ears. He already has, and so will you. In that sense, I am almost happy for you, but still I'm sorry for this new hurdle and wish you luck and God's blessings.

brees said...

He feels you, he loves you, he knows of your love. John is completely deaf in one ear, and sometimes hard of hearing in the other. He has learned to compensate in so many ways. McKay will be fine, no matter the outcome. I know as a mom it hurts though......

John's job is iffy at best right now, so we have been checking into getting our own insurance to cover me at least. I was told I am uninsurable, scary and crazy! It is a horrible system we have going. It feels like a punishment to us hard working folks!! It is just backwards, I wouldnt even be able to pay for my meds without it...... just venting, sorry!

Thinking of you, as always!!

Jenny said...

I am sorry about this latest hurdle. I am also hoping it is the RSV. But, if it isn't, me and Mason will just have to learn to sign as well. There is no way for us to not be his friend:).