Wednesday, April 15, 2009

It's What's on the Inside that Counts

McKay looks good these days. At 7 months, 3 weeks old he weighs in at a never-would-have dreamed-it 20 lbs 8 ounces. He's off the charts for his height and stinkin' cute. As we prepared to make our usual every two month check in with his cardiologist I thought it would be a good time to document not-so-tiny Mac's typical check up routine. I can't ever imagine forgetting what this experience includes, but someday we might be lucky enough to grow foggy on the subject. Mostly, I want McKay to know how proud I am of my brave little babe.
The visit always starts with a chest xray. McKay has a knack for falling asleep in his cozy car seat on the way up to the hospital, so getting undressed for the xray is made even more disorienting because each time we have to wake the poor thing from la-la land. He usually handles it in stride and even giggled at the tech this time. The inside peek the xrays give are always impressive (see above) and remind me that the real truth is a little more than skin deep for my guy.

This visit involved an echo cardiogram (basically an ultrasound of his heart and arteries) to examine Mac's most recent repairs. I was more than a little surprised when the procedure was scheduled to be conducted unsedated. After all, McKay is a very busy body these days. But he cooperated just long enough to get a solid peek at his pulmonary artery which showed good flow and led the team to believe the Glenn is doing its job.

Next it's on to an oxygen saturation, heart rate and blood pressure check. (You have to love the little arm cuff.) McKay has always hugged the low end of each of these measures. Yes, I am concerned to see a 74 percent blood oxygen level considering we're just 5 months post-Glenn, but it does follow suit for him. His cardiologist advised we get a solid sat check at least once a month going forward to make sure he stays stable. We've also been told that if we decide to fly anywhere, McKay will likely need oxygen to stay in the safe zone on the trip. Oy. The thought of bringing those awful green tanks back into our life is more than I can think about. Anyone for a road trip?

The most important conversation of the day centered on the selection of a surgeon for McKay going forward. It was obvious that the topic was still a fresh and emotional one for our amazing cardiologist. (Are you slightly concerned that McKay's as big as the cardiologist that's in charge of saving him? She's itsy bitsy, but optimistic and smart. I LOVE her.)

She assured us that an intense search is on for a senior cardiothoracic surgeon and whomever they find might be just who we need. Her plan is to do all she can through therapy and more minor interventions to keep McKay healthy enough to delay surgery until he's at least two years old. I was surprised by the news. Apparently by two, the chest cavity has enough room to put in a larger conduit during the Fontan procedure to last McKay a decade or two. As long as he stays more pink than blue during the process, I'm in. It was a little rattling to realize that if he needed his Fontan tomorrow, there is currently no one here ready to tackle the complexities of his particular anatomy. We chatted about several out of state recommendations and I feel confident she'll help us find the right person at the right time. Until then, the most important news is that we have time. Once again, it's comes back to realizing that making the most of today is the goal at hand. That assignment is so much harder than it sounds, but we're getting better at it.

So there you have it. That's the dance. It has a tricky, hurry-up-and-wait rhythm, but we're getting more comfortable with the steps. And as far as McKay goes--he's been pure music for all of us. The boy has heart.


marshelle said...

What a beautiful post and child! He is so amazing and I hope he continues on his journey of greatness. Give him a big squeeze for me and know that I think of you and his great heart every day of my life! Love, Marshelle

carolyn q said...

I am glad that McKay's appointment checked out well. WOW, what an accomplishment on his weight. He is an amazing little guy and brings hope to so many!

brees said...

I am glad to see that he is doing so good! We are still praying for you as the search is on for an amazing new doctor!!

Jenny said...

Oh Mindi, this makes my well visits a walk in the park. You have far surpassed us moms that are just doing the daily grind! What an inspiration you are and what a healthy, robust little McKay. He's got Mason beat. I'm looking forward to their playdates!

Christina said...

Keep up the good work McKay! I am glad you were able to find out more about his future surgical plans.

Hugs & Prayers,
Jacob's Momma

The INCREDIBLE Pettit's said...

Hey if you ever want to borrow my monitor just let me know, I know if you don't have to take these guys to the dr, you don't want to...too many grems! I'm glad you were able to talk about his future me any time!

Kyle and Alli said...

Wow. I am glad to see what the actual normal cardiology checkups entail... one day we will get there and leave this darn hospital! Thanks for the details... he is such a cutie!!

Alli Hicken
mom to Grant

Katie said...

I just love reading your posts, you're so good with words. What a great idea to document these card. visits, especially so your little heart babe can read about what he endured, time and time again with great pictures too! I may have to do this someday for Maddie. McKay is precious and it looks like he's doing wonderful, what a big boy!!!
Katie (Maddie's mom, HRHS)

Emily said...

Mindi - He is just so stinkin' cute! I just LOVE his hair. I'm glad things are going so well. I'm sorry that you have to go through this uncertainty with the doctors. How frustrating, and how sad for your old doc. Hopefully, you will find some answers soon. You are an amazing mother!

Sabrina said...

Ha! Reading this and seeing the photos, it's like one of those weird dreams where someone else is living your life, even down to the details like wearing a lead apron. I was just wearing that thing-it's heavy, huh?
BIG difference though, Luna is screaming during each segment. A nurse or doctor cannot even get near her without her going bezerk. I think that's why they always drug her up, seriously!
Great news...he is so cute, and so big, I love it! Yes, he's officially bigger than Luna! They'll make a cute couple some day:)

Michele said...

Okay, seriously, he is so cute and so rolly polly!! I just want to give him a squeeze! I think things will fall into place when it is time for McKay to have his surgery. I would try not to worry too much. (Yeah, right!) Keep the faith and I know things will work out for you! :)

The Simmons Family said...

Hey Mindi... you can call or email me anytime!!