I Packed a Bag

Sam has landed himself in the hospital. I was told on Sunday afternoon by one of his GI (gastroenterology) docs to bring him in to be evaluated based off his symptoms. We decided to try make it through the night, knowing what the Emergency Department (ED) might look like on a Sunday evening.

The next morning Sam’s nurse and I headed for the dreaded ED. For the first time in five plus years, I packed a bag before we left. I finally learned, since we rarely end up coming home from an ED visit.

Thankfully, when we walked into the lobby, the green light was on, which means they were not busy. We got back fairly quickly and began all the tests, i.e. IV fluids, labs, x-ray, and ultrasound. By the afternoon we found a seemingly definitive answer. Sam was very blocked up. Poor guy.

My packing skills are sub par. I like to have sandals while I’m in the hospital. You do not want to be barefoot on a hospital floor and when your getting up several times throughout the night to care for your sick child, sandals come in handy. Sam’s home care nurse got a pretty good laugh when I went to switch to my sandals. I was so prepared! I’m blaming it on lack of sleep.

Hmmmm, something’s not right here.

The plan was to keep him for the night, “clean” him out, start feeds, and go home. We’ve never had to do a bowl clean out before. Not fun.

He had a second x-ray because he clinically looked cleaned out, but was still not turning the corner. Bummer. The x-ray showed he was all cleaned out so we hoped it was just taking him a little longer.

Here’s the thing, when you have a nonverbal kid, these kind of things are that much harder. He can’t tell us what hurts or what’s bothering him. We can only use the cues we know for when he’s not feeling good. For Sam, the cues are facial grimacing, low energy, his nystagmus gets worse, and clicking his hips. We want our energizer bunny back.

On day three, he still wasn’t turning the corner. The consensus was try start feeds and see how he does or get a CT scan to rule out anything else.

We got a CT scan and will wait for good news.

Faith Over Fear

Sam Strong

Eye Surgery Update

Except for his PTSD when we walked through the second set of double doors, Sam’s eye surgery went well. The genuine kindness and enthusiasm from the many who know him in surgery is definitely helpful. The tummy portion didn’t yield any answers, but we were able to get his feeding tube changed, which is always a bonus to get this done under anesthesia.

After Sam came out of recovery, the anesthesiologist stopped by to check on him. She commented Sam was doing much better than most kids do after this surgery. Yeah, he’s one tough little boy.

He was really miserable the first night, but has been doing really well since. The medical world never ceases to amaze me. It’s so crazy what they can do. We noticed right away, Sam’s right eye is straight!

We got a good laugh the next day when he hopped off the couch after his morning nebs and meds routine, pointed to his eye, shouting “Eye!”, in the funny way he says it, and started running. He often runs circles around our center island in our kitchen. He started his run and kept bouncing off the cupboards. Again, he noticed something was different. We couldn’t help laughing at what looked like a ball in a pinball machine.

One of Sam’s home care nurses said, he’s a reminder that things could be so much worse. He goes through so much and stays so happy all the time. Well said.

Sam Strong

Eye Surgery Tomorrow

Sam will have his first eye surgery tomorrow. The hope is this will fix both eyes and he will only need the one surgery. He will also have a scope to look at his esophagus (endoscopy).

The ophthalmologist doing the surgery explained, “Often there are kids who have one lazy eye that needs surgery to be corrected, sometimes there are kids who have two lazy eyes that need surgery to be corrected, and rarely, are there kids who have two lazy eyes and nystagmus that need to be corrected with surgery.” Yep, that sounds like Sam.

As always, pray for his doctors, nurses, anesthesia team, and anyone else involved. Pray for a smooth and quick recovery for Sam. Pray for a successful eye surgery and answers to our seemingly never ending digestive issue questions. Pray peace for our hearts.

Sam Strong!