Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Tuesday, May 18, 2010

To trache or not to not the question.

Looks like it's time for me to get my game-face on. While I was writing my last update, I almost included the trache possibility, but I was trying my best not to make room for that. Joel did amazing on CPAP for the first 24 hours. After that, he was having such difficulty breathing, that he was actually losing weight, which is the opposite of their main focus right now. I can't remember if I've mentioned this before, but Joel also has a partially paralized diaphram on the left side. That played a big part in the amount of work it was taking him to inflate his lungs properly. Withdrawls did too. Sunday night when I called, Jesus the night nurse...(yes, really...his name is Jesus...) said that he was doing a little better. So, yeah, I was a little surprised to walk in and hear that in front of the 20 people present at rounds yesterday morning. It's not that I didn't know it was a good possibility, I just thought we were turning around.

I'm handling this as well as I hoped I would, which is great. When they intubated him, I cried, but only because he stopped crying. I miss his voice. I miss his face not having tubes shoved into it. There was comfort seeing his eased breathing afterwards though. He was able to sleep for longer periods of time, more comfortable. I though, was bombarded by people. I've gotten more familiar with the staff than I ever envisioned, and periodically they'd stop by to check on him and ask how I was doing...assuming I'd be dissappointed. It was hard not to cry when they're so caring. This is the truth: I'm not dissappointed. It's taken me a full day to not feel like I'm on the verge of giving in to worry though. Having a cardiac baby means that your life as you knew it will be different. No prob. Handled. Having a cardiac AND neuro baby with a trache is a different picture all together. There will be a nurse in our home for 24 hours the first three days, and after that, 16 hours a day. First thoughts: "How am I going to be able to run around the house naked, speak my mind, and have any private moments with my husband..... without being exposed?" There will be equipment in our home running 24 hours a day. There will be training for Adam and I to learn. And the biggest change, the only one that I'm feeling anxiety about, is the affect this is going to have on the other children. That is the most challenging idea. How do I incorporate this new lifestyle into our old one, without the other kids getting the crappy end of the stick?

I know this is cliche...but God doesn't give me more than I can handle. Even at our worst moments in here, I never felt like, "I can't handle this stress." I just knew to put one foot in front of the other. So, my 'A-Game' is getting the kinks worked out. I want what is best for Joel to get home the quickest, and this is it. Our family will be together soon, and until then, I need to keep my head in the right place. No time for selfishness. I'm the Queen of my household, and that's what we do, right ladies? We "GIT R' DONE." :)


  1. my beautiful friend Kari. I have thought of you many times in the last few months. I drive by a billboard of you everyday. I am sad to see what you have been going through but it sounds like you are handling it as well as you can. Holding strong. He is a sweet little boy who will thrive from the strength of his family.

  2. TARA!!!!! HI! Thank you so much. I love you. It's been way too long xoxo