Wednesday, September 10, 2008

Good News, Bad News


We headed to Primary Children's this morning for McKay's first post-op check up. I have to say it was not the best of feelings to walk into that hospital again. I love/hate it there. It's a strange mix of emotions I'm sure will get more complex in the years and experiences to come.

The appointment started with a chest x-ray that McKay practically slept through. Then we headed in for an EKG, which he hated. They have to attach about 12 stickers with electrodes onto McKay's chest to perform the test. He hates stickers. I don't blame him as we are still working on getting all the sticky gum from his ICU stay off of his arms and legs. The test only takes about 5 minutes, but he screamed the entire time.

The technician started asking questions about McKay's oxygen saturation which was ringing in this morning at a lousy 65%. I told her that we were concerned as well as his spot checks continued to go lower over the past week. She immediately asked the docs about it and hooked McKay up to some O2.

Soon the doctors came in and agreed that McKay needs to be moved to 24/7 oxygen support. It seemed like good news to them as McKay now weighs in at a whopping 8 pounds 1.5 ounces and his lower oxygen levels are a first sign that he's already outgrowing his shunt. Seriously? It's only been 19 days since he got it! Their good news equaled one big, crappy reality check for me as it set in that we would be back to business fixing McKay's heart sooner than later.

So one phone call to the oxygen delivery company later and we're all set for weekly deliveries of air for our sweetheart. I know I should be glad that he's growing so big and strong...and I am. But it's such a bittersweet victory to do all you can to make sure your baby is thriving when you know the ultimate result of your efforts is another serious surgery and extended hospital stay. I just have to keep reminding myself that without going through this McKay will not live. It's just that black and white. It's even harder to remember that yucky reality now that we've had a chance to get to know this spunky little spirit a bit better. It's just that he looks so normal. Until you flip him over and see the big scar across his back you would never pick him out of a crowd (except for being so cute!).

Good news? McKay is growing. Bad news? McKay is growing and that means we will need to be vigilant about making sure his heart continues to do the job for him. We've been advised to make weekly appointments with our pediatrician so that he is seen regularly and frequently by a doctor who can monitor his condition in a more in depth way than we do. We'll check in monthly with the cardiology team as well.

McKay is truly a blessing in our home and as bummed out as we are about having to move from the spot we've just become comfortable in, that's the way the Lord works. Always moving forward. By the way, McKay is three weeks old today! Happy birthday Tiny Mac. Much love to all.

9 comments:

BrennanFamily said...

Hey guys, he is so cute! It's amazing what their little bodies can handle. We think about you all the time and our prayers are with you. Let us know if you need anything! All our love!

johnsonfamily said...

He's just ready to move on and be and be a normal little boy. He wants all this behind him as soon as possible. And who can blame him, right. I think he has the same fighting spirit my Dad had. This little guy, with the support of amazing parents and brothers is going to be just fine.
I love you guys so much and hope to get over soon to meet Makay.
Love
Amy

Hollie said...

I just "stumbled" across your blog. I also have a heart baby, and can understand the joys and fears that are part of this amazing journey. I wish you the best as you prepare for your upcoming Glenn surgery. My daughter had her BT shunt in January and Glenn in June. It's quite the adventure!
Good luck and enjoy your little heart hero!
Hollie

jaci said...

Always praying for you guys! We know McKay is such a strong little guy and has such strong parents...he is so lucky! we love you!

Ryan & Brytten Pettit said...

Hey I know how it is to be at the top of the hill and then fall slowly until the Glenn, but life gets much better and your NORMAL becomes the only normal you know. If you have any questions please ask.
Heart Hugs

kto1s said...

Emotional roller-coaster ride number 100,023 for you guys, I'm sure. You are certainly riding it well--and OH McKay is SO darling! Know of our love for all 5 of you.

nimmy and girlies said...

Mindi, I just found your blog through Jennifer's links. I did not realize what an ordeal you have been through in the past little while (that's what I get for being on the other side of the neighborhood). I'm glad that McKay is at home and has great care takers. I hope you don't mind, but I added your blog to my blog links. Please come visit over at secretofnimmy.blogspot.com and I'll for sure keep myself up to date through your blog. Take good care of yourself and your little one.

Kimi said...

That is such a cute picture! So glad McKay is getting bigger, but so sorry that it means back to business.

Michele said...

I just found your blog again after not looking at it for months! So glad to hear that things went pretty well. I added you to the list of our 'heart buddies'. McKay is so cute. I hope you have a good run at home.

Michele
(Gracie's Mom)