Dilation

We out!
I can’t wait to be home!

Sam was happy, but also nervous at times, when we left the hospital. He walked out with excitement, but would stop here and there, and clench my leg with with fear. I can’t imagine what was going through his head. That’s the thing about having a nonverbal child. I can read his emotions, but I also know there is so much more attached to those emotions and so much going on in that little brain of his. I would love to hear it all. Someday.

Overall, Sam has been doing well. His nights have been rough, but his days have been mostly good. Home care nurses, priceless. Both him and I are definitely happy to be home.

You couldn’t put a price tag on when Sam saw his Abby for the first time, in over six weeks. Let me remind you, Abby wanted nothing to do with having a little sister or brother five years ago. The bond they have now, is priceless.

Ahhh, home sweet home. My Elmo desk, and my spoons and forks.

Most of the time he’s happy with his spoons or forks at his favorite spot in the house, his Elmo desk. Or dancing in the living room to his toddler music.

Sam will have another esophageal dilation tomorrow. Unfortunately, for Sam, this is a routine procedure. We know the drill. I’m not saying the drill is easy, but we definitely have it down to a science. If you’ve ever had a child have surgery and remember the process, it’s quite the ordeal. When you’re asked to be on a committee to make the patient/family experience better, pre and post op (before and after surgery), you must be a be veteran. Yep, true story.

Pray everything goes well tomorrow. Pray for Sam’s surgeon, nursing staff, and anesthesiologist.

As always, Sam Strong and Faith Over Fear!

Happy Thanksgiving! Remember, you can always find something to be thankful for. Focus on what’s good in your life. I promise, there’s something.

Cincinnati Cancelled

Well, after talking to the docs at Cincinnati they thought it would be best to cancel Sam’s surgery and reschedule.

Bummer.

It is for the best though.

I can’t imagine getting on a plane with him tomorrow morning. He’s a little better today, and off the oxygen so that’s good, but still very lethargic. He’s definitely starting to turn the corner though.

If he were a typical kid, he would have been in the hospital a few days ago and likely intubated.

As we suspected, Sam has tracheitis which is an infection in the trachea. For a typical kid, tracheitis is super rare. It’s the cursing of a having a direct access to your airway. Thankfully, for Sam, it’s always been easily treated. This means fourteen different nebulizer treatments, four times a day, an oral steroid, a little oxygen support, and mama, daddy, and/or a nurses lap.

Are we thankful for home care nurses? You have no idea.

Except for figuring out how we’ll handle the medical supplies already shipped to the hotel, we were able to cancel everything hassle and fee free. That was a huge relief.

This is a perfect example of truly living one day  at a time. Yes, it’s a bummer, but it is okay and it will be okay.

We are thankful Sam didn’t end up in the hospital and he’s on the mend.

Sam Strong.

Faith Over Fear.