Wednesday, July 14, 2010


McKay managed to turn a challenging morning into a
golden afternoon, complete with a visit to the patients-only playroom.

I was kind of a brat today. I share that only because we're friends.

Here we sit on day five after a radical open heart surgery on my 22-month old son, and things simply are not moving fast enough for me.

Yes, you spell that: B-R-A-T.

It may have well been the cumulative effect of five days of 4 am xrays, 5 am blood-curdling blood draws or that fact that McKay's chest xray came back unchanged for the third day in a row. GRR. Oh, and they put him back on oxygen this morning because he continued to de-sat on and off all last night. By 9am I had pretty much decided it was not going to be a successful day.

I packed a bag of dirty clothes including Mac's cannot-be-without striped blankie he had just puked up all his meds onto and walked my vagabond self to the washing machines in the family area of the hospital.

This is it, I thought. Mac is still draining like a soda fountain from his chest tube and this is going to be our life for a while. I tried to take a deep breath--that's what I always tell my boys to do when they're upset--but I could not get my lungs to fill. I was carrying a weight of my own making and I had attached it right to my chest for me to feel and all the world to see.

Matt tried to console. To check in. But I blocked him out.

He gave me a kiss.

"I am not about to make out with you in the hospital," I told him.

"It was just a kiss," he said.

Yes, that spelling again was B-R-A-T.

To make matters worse I had decided that the agenda for the day included me returning from the laundry to load McKay up into a wagon and take him for a stroll around the floor. If I was going to will him better, it was going to start today.

Instead, when I returned he was tethered to a good 90-minute course of various IV drugs. GRR.
The meds always wipe him out. So he slept for a solid 4 hours after the push. I was getting impatient and worried about MY wagon ride.

Matt came to me and said, "I mapped you a run. You need to get out."

It was true. I have not left the hospital since last Friday. I know in my head it's an unhealthy thing to eat, sleep, and worry in this place around the clock, but I simply cannot leave him. Cannot.

Mac woke from his nap. We loaded him in the wagon and we rode. We rode to the playroom where he was in heaven for about 15 minutes. And then he was tired of sitting up, tried to lay on the floor, and we promptly loaded him up and returned him to bed.

In our short time in the playroom, however, we met a little girl from Tennessee who showed up with her family to get her Fontan operation a long while ago and was told she was not healthy enough for the Fontan and instead got listed for a heart transplant. So they wait. Miles away from home. On a twist of fate they never planned.

On our way back we passed the room of another little girl whose grandmother said before they could take a walk, the nurse had to take her vitals. The tiny little three-year old promptly turned around and jumped into her bed ready for the nurse to do her thing. "That would be nice," I remarked to our nurse who was all too familiar with McKay's tendency to act like he's having his arm sawed off when they take his blood pressure and temperature every four hours. "She's been here for 7 months," the nurse replied. "It's not nice, it's sad."

So the moral today, the day I started as a pity party, but ended snuggling with an ever-improving son who continues to be a gift from God, is this: PERSPECTIVE IS EVERYTHING.

I left the hospital tonight. I left Matt to have some alone time with McKay, and to take a walk and check out the course my sweet hubby charted for me; one I will run tomorrow. I thought a lot about how I chose to act and feel this morning. I knew many would say it was justifiable. But I also knew it was not of God. I am grateful for His mercy and His continual patience and love and perspective.

Here we are. Recovering. From the heart repair we begged for. Performed by the surgeon God has best prepared to administer it. My son is alive and making progress. And, eventually, we will go home. WE ARE BLESSED.

Tomorrow I will get out and fill my lungs and be strong. Because I want and expect the same from McKay. And at this point in the game we all must give our best effort. Because energy, and juju, and positivity, and expectations can be beautiful things if rightly placed, patiently adjusted, and consistently applied. Tomorrow will be a new day. I promise.


Kyle and Alli said...

You are a rockstar....both mommy and McKay!! What a sweet husband you have to try to meet your needs. The hospital stays are trying for the whole family. We know the pains of living in a hospital far from home (though not nearly the cross country you are experiencing) and my heart aches for the monotony of waiting for healing. Thanks for sharing that great reality check on perspective. It is something that I often need to hear too. I sure hope that tomorrow is a better for all three of you and that McKay can have a well deserved play time in the play room!

Jenny said...

I have been waiting for your post all day. Get a good nights sleep, enjoy your run tomorrow and enjoy your sweet little guy (and your sweet bigger guy too). XOXO.

jaci said...

I love you mindi! Just know that my thoughts and prayers are with you and mackay constantly! You are so strong! Hang in there! I love you!

Becca said...

I had to laugh when you mentioned 4 a.m. x-rays. Do they do it the same time everywhere? I remember the babies crying a few beds down and as it got closer, you knew the dreaded 4 a.m. x-rays were coming. Thanks for the patience check! You have no idea how much I needed that today.

Becca-Ellie's mom

Jenny Lincoln said...

You have every right to have every single feeling you are having and it is completely justified. I remember after my daughters Norwood I never left the hospital either (I'm sure it's even harder to leave after the Fontan when they are so much older) and I felt like I was losing my mind. Everything irritated me, or if it didn't irritate me it made me cry. It's so stressful on everyone. I'm glad you had a chance to get out. I'm glad to hear McKay is still doing well. We will keep praying for all that drainage to clear up and hopefully that is what is what is affecting his sats.
Praying for you and keeping you in our thoughts!
Heart hugs,

kto1s said...

Mindi- seriously love you. And you guys are constantly in my prayers.

Katie said...

I'm in tears. What a beautiful, honest post, one I needed to be reminded of as well. You have such a wonderful way with words and I look forward to reading your posts and your insight on life and this journey we're all on and didn't ask for.

I remember doing the same thing at the hospital...feeling sorry for myself and the situation we were in with our daughter, then if I stopped, quieted, and took a look around, what a blessed situation I was in with Maddie compared to so many. It's simply heartbreaking and mind-boggling what some kids and families endure. It sure does make a difference when we take it off of ourselves.

We'll be praying for higher sats and more drainage from little man. You're loved and thought of from far away! Enjoy your run today, you deserve it :)
Katie, Maddie's mom

The Butlers said...

You have every right to have the emotions and feel the way you did. You are going through a lot right now. Keep your chin up and know you are being thought of every moment of the day...keep up the improvements Mr. McKay! Get healed soon!

Melissa V said...

You are an amazing woman and Mom, just remember that as you take care of little Mac you also need to take care of you! You have permission. Taking care of you makes you stronger to meet his needs. We are all thinking of you, McKay, Matt and the boys here at home. We love you ALL. Give both the "guys" there a big hug from us. (It will be a stress relief for all of you) - and who said you can't "makeout in the hospital"? :-)

Kristi said...

Ahhhh Mindi, you're a special lady... even if you are a brat. :). Love you. I think we all could use a little perspective. Thanks for providing me that today.

Dianne said...

Mindy - take care of yourself so you'll be ready for your little one. Enjoy the run!!!! You are so blessed to have a great husband to not only look after your son, but also you at the same time. Prayers go to you and your family. May you guys be home soon to enjoy all of your boys!!! (romping and stomping and leaving a mess everywhere and those wrestling matches. . . . )

Heather English said...

I love reading your blog! You are so inspirational!

Wendi Bench said...

I could read about this all day. You have such an amazing outlook and a very good perspective on life. Thinking about you, Matt, and the boys...xoxo