Today at 2:00, Sam will go down to surgery to have another test. They will do an endoscopy with contrast into his esophagus and GJ-tube (feeding tube). They are basically taking moving pictures of where things are going when he is being fed. They are mainly checking for an obstruction.
Here’s the thing, we don’t want them to find anything, but if they do and it’s an easy fix, that would be the best case scenario. Otherwise, we’re back to square one, the guessing game.
I’m not even sure what to ask you to pray for. For now, pray we can figure out what’s going on and it will be an easy fix.
Over fifty times his little body has been put under anesthesia. Over fifty times needles, scalpels, scopes, and more have messed with his insides and outside. Over fifty times of watching my little boy slowly roll away on a hospital bed.
Just because we have done it over fifty times, doesn’t mean it gets any easier. If anything, it gets harder. The older Sam gets, the more aware he becomes of what’s going to happen. He’s a smart little boy, knows the routine, and knows it’s not going to feel good. That whole white coat syndrome you hear about, it’s a thing.
This happy little guy has been through so much. He probably won’t remember all of it, but this mama and daddy’s hearts do and will.
We can worry or trust God, but we can’t do both. We choose to trust in a God we believe has a perfect plan for Sam.
Pray for our little Superman on Wednesday. Pray for our surgery jitters. Pray for the surgeons hands, for his anesthesia team, and all the other medical staff who will be involved. Pray Sam doesn’t throw any curve balls, as he’s unfortunately infamous for. Pray for a smooth and quick recovery.
All the stars have aligned or in my opinion, God had a plan.
Overall, Sam’s been doing well. The temporary fix seems to be holding up for the most part.
I can’t help but think there was a reason we had to cancel the first trip to Cincinnati. If we would have gone and Sam would have had his airway surgery, the likelihood of the surgery being successful would be slim to none with Sam’s new diagnosis.
Again, as we suspected, the second trip was canceled as well.
If I go into the details, I’ll have to write a novel.
Our surgeon here consulted with the main surgeon in Cincinnati.
Sam is scheduled to have surgery here on September 30th. It’s a big one, with a six hour OR time slotted and a five to seven day stay in the hospital. That’s without complications.
Minor surgeries, which have been the bulk of Sam’s now fifty plus surgeries, have always gone really well for Sam. Major surgeries, on the other hand, haven’t always gone as well.
This surgery will go well, without complications.
Are we nervous? No doubt! We choose not to worry about the things we cannot control.
He will be in the best hands and we believe this will be a final fix to Sam’s GI issues.
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 was pretty much back to himself on Monday. When he gets sick, he falls hard, very fast, but he comes back just as fast. Darn tracheitis.
One of Sam’s nurses who was new to us in March has never seen Sam sick. She was here the day he started to get sick. He fell hard, fast. We had a very rough day. She’s heard me forewarn her how fast it happens with him, but when she experienced it, she couldn’t believe the actuality of it. She said she went home and cried. Enough said.
He’s better. That’s all that matters.
We are all set! Surgery is already rescheduled for September!
I am bummed we will be gone during the first week of school. If we were living in normal times with school, it would be good timing, but we’re not.
Distance learning was not a super great experience in our house, but we made the best of it. It makes me a little nervous to have the “teacher” gone the first week of school, but it will be fine. According to my daughter, the teacher (aka, me) isn’t top notch anyway. 😂
The flights, hotel, and car rental are booked again and the oxygen is approved. Thankfully, all of the medical supplies that were already shipped to the hotel can just wait a little longer. The hotel general manager had no problem keeping the extra boxes for us. Whew. This traveling thing with Sam is no cake walk, but it does get easier every time.
Well, after talking to the docs at Cincinnati they thought it would be best to cancel Sam’s surgery and reschedule.
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.
The one thing I’ve learned about having a medically complex child is it’s like running a marathon that doesn’t seem to end. I’ve never run a marathon before, but the people I know who have say it’s the hardest most rewarding experience.
I envy the ones who have persevered through 26.22 miles of running. What an incredible accomplishment.
Our Cincinnati dates are set! Sam’s next surgery is August 19th. He will have surgery to try fix why he has the trach (breathing tube). In layman’s terms, they will attempt to sew together the hole in his airway. He’s had this surgery done two times here, but it failed.
We are seeing the best of the best. Our doctors here care enough about Sam to know they are not the ones for the job anymore.
We will go back September 30th for some GI procedures and to check to see if the surgery worked.
I wish I could tell you they would remove his trach (breathing tube) if the surgery works, but he has several more things to be done in order for that to happen.
One thing at a time.
One foot in front of the other.
You know what else I’ve heard from those crazy marathon runners? It’s the call of their name they hear from a distance cheering them on that helps keeps them going.
When it comes to Sam, there are many on the sidelines cheering. Thank you for staying on the sidelines and continuing to cheer us on. You have no idea the impact it’s made.
We decided to reschedule Cincinnati. After realizing Abby had soccer tryouts while we would be gone, we thought we didn’t want to not be here for her. We also would have had less than a week and a half to plan. That would be a tall building to leap with Sam!
Now we are waiting to get another phone call to reschedule. We thought we’d here back from them this week, but we didn’t. Hopefully we’ll get a call next week knowing they want to reschedule for August.
When it comes to Sam, we’re always waiting for the next thing. When you are in a constant Waiting Place under circumstances at no fault of your own, it’s much healthier to live in the moment than to dwell on the waiting.
We choose not to stay in the Waiting Place.