We’re home, but…

…there are more curve balls.

Overall, Sam is doing good. We are both happy to be home. There was a day when the hospital felt like home to Sam and almost for me, but that feels like a very long time ago. Thankfully we were only there for one night.

One thing I’ve learned living in this small world of a mentally complex child for the past four years is, when there’s more than one type of doctor in your child‘s room giving you news, it’s probably not going to be good.

And it wasn’t.

The hospitalist, a pulmonologist, Sam’s gastroenterologist, and his main surgeon were in the room. Let’s just say the hospitalist was not a young buck. She had clearly been practicing medicine for a very long time. When the conversation was over, and she said, “Wow, I’ve learned A LOT today!”, I didn’t know whether to laugh or cry. I laughed, of course.

Sam did not need a dilation. There was a much bigger problem found. Basically, Sam’s stomach is in his esophagus and the rest of his gastrointestinal organs are pushing up into his chest. Sam’s gastroenterologist was able to fix the problem temporarily using the scope.

He won’t be able to have his airway surgery in Cincinnati yet. We have A LOT to figure out between Sam’s doctors here and Cincinnati.

We are hoping the temporary fix will stay until we decide what the next best steps for Sam will be.

Don’t worry, as always, Sam will knock this curve ball out of the park! Making it to first base will just fine too.

Sam Strong!

Faith Over Fear!

There’s no place like home.

Curve Balls…

…are a constant when it comes to Sam.

We are now less than two weeks away from surgery.

He’s been having some rough days off and on. His docs had put him on all the stuff a few days ago as a precautionary until surgery. Usually the stuff kicks in fast.

Tonight got tough.

After a phone call, his pulmonologist wanted us to bring him in. No, he’s fine. He’s been much more sick than this and we’ve kept him home. “Do you think he needs a dilation?”, she asked. “Yeah, that’s what I’m starting to think.”, I responded. She ends our conversation with, “I’m sorry.”

She knows. She knows what Sam’s been through. She knows what we’ve been through. She’s knows it better than most. She knows it’s not easy to pack him up and bring him in. She knows he’s likely okay to stay home.

She’s right though. She also knows if he’s inpatient, it will be A LOT easier and faster to get him into the operating room.

She knows his surgery got canceled a few weeks ago. She knows his surgery is rescheduled in less than two weeks.

She called me back before we left our house. “I talked to Dr. Surgeon and Dr. Gastroenterologist. [They both have names, but I like to be respectful of their privacy.] They said between the two of them, they will get Sam on the OR schedule in the morning.”

We are now sitting in the Emergency Room, waiting for a room upstairs. Waiting. Waiting. Waiting. Waiting. Waiting. When you are in the hospital, there is so much waiting. Covid makes the wait even longer.

The lV is in without too much effort. Whew. Sam isn’t always the easiest poke. Although if you could hear him cry, they would have probably heard him a few rooms down. It’s sure a lot more heart braking to watch your child scream, but no sound comes out. It’s something you never really get use to.

Maybe I’ll get some sleep tonight. I just need a little.

He’s sleeping now. That’s all that matters.

Now I know I’m not the only one praying for my family and my sweet little boy.

Tomorrow I will have good news for you.

Admitted.

In the two and a half years Sam has been home from the hospital, we have made many trips to the emergency department (ED). In those two and a half years, we’ve always been able to go home, which according to everyone here is just shy of a miracle given Sam’s history. Although we love the people here, we do everything we can to stay out of here.

Unfortunately, there isn’t a clinic or urgent care for Sam. When things go south, it’s either maintain at home or go to the hospital. And unless Sam’s feeding tube comes out or one of his docs wants him to be evaluated, we do our best to maintain at home.

Poor buddy isn’t feeling so great.

Based off Sam’s symptoms, Sam’s GI (gastroenterologist) doc instructed us to take him in yesterday. I was a little shocked when the ED doc thought it would be best to keep him. I, of course, did not plan for getting admitted. No extra clothes or toothbrush for me. I feel like I have to keep apologizing for my stinkiness. 😂

I thought once Sam got some IV fluids in him, he would perk up and we’d be heading home. Not so much. He’s still the same little lethargic boy we brought here yesterday. He’s not worse, but not better either.

Even after fluids, he’s still not feeling so hot.

They are checking all the boxes and are trying to figure out what’s going on. It could be tracheitis, which doesn’t show up for twenty-four to seventy-two hours. He might need another dilation. It could be just a cold. Although, like I’ve said in the past, it’s never “just a cold” for Sam. There are plenty of places he could have caught something. The two biggies are starting school and being in the ED last week cause his feeding tube came out. School = germs and the ED = even scarier germs. They are also monitoring his blood pressure as it has been elevated. With his history of hypertension, there is concern, but they could also be up because he’s sick. Again, there are so many things it could be. There are usually no easy answers with Sam. He a complicated kid.

Let’s pray whatever it is, it will run it’s course and/or get fixed without complications. As of now, he needs to tolerate feeds before we go home.

As always, staying Sam Strong.