HDYDI: Live Your Life

I have a whole file folder of things I want to post for my weekly “how do you do it” Monday series.

Today, I just need to get a few things off my chest.

A couple of weeks ago, we met with Luke’s cardiologist about his upcoming heart surgery. I feel incredibly confident about his surgery next Wednesday. Not only will we close one of the holes in his heart, but we will glean some invaluable information about the oxygenation rate of all four chambers. Sorry, I geeked out with a medical term. All four chambers of your heart pump blood and oxygen to your body. Because Luke has two holes, he burns quite a bit of calories sending the blood where it should go, in spite of those holes. We’ll find out just how much/hard he’s working. Long-term, this is information we need should we move forward, or not, with closing his second hole.

The best news is that his surgery is slated to be outpatient. We’ll go in early in the morning and hopefully be home by bedtime. Of course, we have been sucked into the vortex at Dell Children’s. So, I’m keeping my options open.

The mixed bag of news we got was that we cannot operate on both his heart and his tonsils (we were considering taking them out). But, we learned that too much bacteria would be released into his body, which is not super great when you’re putting a foreign body in the heart to close a hole. It increases the risk of infection. After a doctor’s visit with his ENT, not only is the bacteria an issue, but so is the recovery.

Oh, the joys of having a child with sensory and eating challenges. Tonsil surgery would all but guarantee a setback. Please, DON’T sign me up for that ball of crazy. Who’s all for praying that problem away? ME-ME-ME!

And, in crumtastic news the developmental pediatrician visit we’ve rescheduled not once, not twice, but now for the third time was cancelled on Friday. I’ll spare you the sordid details, but I’m fairly certain I could teach an entire front office staff on the finer points of patient communication. Now that I’ve had the weekend to calm down, I’m sure I’ll be rational when I call them later this morning. Yes, quite positive.

With that extra hour this weekend, what did I do? Cleaned out medical files and made a plan to pay off the last of Luke’s medical bills. Just in time for a new deductible year…

Some days I really just want to throw my hands up in the air and cry out, “Uncle.” Oh, and did I mention we had a completely unexpected, very scary, ER visit this weekend? Yeah, never a dull moment here. I’ll give you the 411 on Wednesday.

In spite of the looming surgery, the uncertainty of another, the crappy bills, the less-than-stellar office staff and the ER visit, this weekend reminded me that God has it all under control even when my view seems like a complete tailspin. We are living this life the way God intended – with humility, passion, love and gratitude.

This week, I’ve got a special guest post over at Austin Catholic New Media, the details from our hospital visit and NICU reunion and hopefully a fun before and after of the boys’ bathroom.