Wednesday, August 27, 2008

Just One More Hurdle

Mr. McKay continues to amaze. He is now officially off of any type of breathing support and he keeps "high sat-ing", meaning that his O2 levels are actually higher than they expect for heart patients and we may need to consider methods for controlling how well he's oxygenating his blood...crazy, we know.

We have just one more major hurdle to clear before McKay can come home--eating. They moved his feeding tube into his stomach today (and if you're wondering how they do that...they just pull out the appropriate length of feeding tube from his nose. I know, pretty gross). It made the poor babe sneeze up a storm to have about 10 cm of rubber tubing pulled through his nose to move the tube from his gut to his stomach. He is tolerating the milk in his tummy well and they will let me try to feed him his first bottle tomorrow. I am thrilled. If I can get my tough guy to swallow well and keep the feeding down we will not only get rid of that ugly yellow tube up his nose, we will also be packing our bags in the next few days.

His night nurse says he's been fussy tonight and wants to be held all the time. That's a good thing. Some of these babies don't want to be touched after having to be left alone for too long. Apparently his fussiness has earned him a bouncy chair and music system that is helping to keep him happy. Go McKay!

I must say that Primary Children's is the most amazing, inspiring and tragic place I've ever spent time. There is so much hope there, so many miracles performed by skilled doctors and nurses, and yet there is a heaviness to the air there that I can only explain as a feeling of mourning. Not necessarily always a mourning for the loss of a child, but it's a mourning for time lost, a permanent change in an awareness of our mortality, and a life-changing awareness of how fragile our lives really are.

We have been touched by some very special nurses and doctors that have seemed to take an extra special interest in McKay. (They probably make all of their patients feel this way.) Never have we felt like like a number. Never has any question we've asked been dismissed. Never have any of our middle of the night phone calls to his nurse felt patronized. They have incorporated us as partners in McKay's recovery and that makes us feel like something very special...we feel like his parents.

It's those relationships we've built over the past week (has it really only been a week???) that will that will make our return visit in a few months bearable. But we can't worry about that now, it's nearly time to bring McKay home and feel like a complete family again. Thank you for your love and prayers.


Marshelle said... are an amazing person and family. I am so excited that things are going well for the little guy. I am so glad it has been a good experience at the hospital. How wonderful it will be to finally bring that baby home! If there is anything you need, please let me know! Keep hanging on and let that beautiful spirit of yours keep's healing McKay! I just know it. Love, Marshelle

Mirissa said...

I am so glad to hear this strong little guy is doing so well. Thank you for sharing this experience. Love you!

Kimi said...

Wow! He is one tough dude! Can't wait to hear about the homecoming, hope it is soon.

Welch TLC said...

Cox Fam, we are jumping and cheering on the sidelines for McKay and your family. We love you.
Keep being courageous


Aimee said...

Mindi, your description of Primary Children's is so acurate. It is a fabulous hospital. Although when people would say to me, "Isn't it just so wonderful?" I didn't know how to respond. It does have a heavy air, like you said. Even now, almost nine years after staying there with Aubree, I feel sad whenever I walk through... Both sad and grateful at the same time.