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Minute by Minute

Fourteen days later, Sam seems to finally have turned the corner. Thank you Lord!

It’s been mostly hard and exhausting for both Sam and I since my last post. If I’m being honest, it’s been rough since the day of surgery. Let’s not focus on that. I tried my best to capture each glimpse of hope on camera.

Day 8…

The Pulmonologist said, “I think he gave us a scare, but he looks great.” Yeah, unfortunately he’s known for that. Those scares sure do a toll on a mama and daddy’s heart. PICU docs are the last docs you want to scare, but my little boy is a fighter.

He smiled for the first time! Oh, how I love that precious little smile. Or I should probably say big, because when he smiles, it’s with his whole entire being.

His first smile was for his Abby (sister) on FaceTime. He melted every heart in the room. The nurse got a little choked up. This little boy wants to go home, so do I, and everyone at home wants us home. We’re getting there!

Day 9…

He got his catheter out!

Day 10…

He finally pooped!

Day 11…

Sam is sitting up on his own and playing with his favorite toy-spoons.

Day 13…

No bumps of morphine!

Day 14…

Sam was actually himself the entire day today! The little boy we know, who is very medically complex, but the happiest, easily and self entertained kid was back yesterday.

Day 15…

He’s completely weaned off the drugs we can’t take home and up to full feeds. Pray for another day like yesterday and no more surprises so we can bust this joint in the next few days!

Faith Over Fear!

Sam Strong!

A Better Day

Sam is very sedated, but has had a pretty good day.

Thanks to Pain and Palliative, he’s been more comfortable and his pain is being managed.

When he does wake up a little, he’s really out of it, but okay, versus yesterday, if he was awake, he was crying or grimacing. Today there has been less crying, less grimacing, and less bumps of morphine. Progress.

His blood pressures have been consistently high the last week. Sam has a history of high blood pressure. Gee, I wonder why. He’s been off all of his blood pressure meds for two years. Because of his history, Nephrology put him back on a medicine for now.

He ended up with pneumonia a few days ago and yesterday, his x-rays showed a tiny pleural effusion. The increase in oxygen wasn’t enough so he ended up on a vent for extra support.

Today, they are trying feeds again, but at a much slower rate, three milliliters per hour.

Today, they will try to slowly wean him of the vent as his lungs look better on today’s x-rays.

Looks like we’ll be here longer than anticipated, but as long as he gets better, and he will, that’s okay.

You know Sam, he likes to win as many hearts as he can. Even when he’s barely moving, this kid is still stealing hearts.

Slow and steady wins the race.

Sam Strong!

Faith Over Fear!

Classic Sam

I wish I could tell you the last few days have been better, not worse.

I wish I could tell you his recovery is going smoothly.

I wish I could tell you we’ve been able to manage Sam’s pain.

I wish I could tell you we went down on the oxygen, not up.

I wish I could tell you Pseudomonas was not growing on the trach culture we decided to do the other day.

I wish I could tell you Sam’s turning the corner and he’s not been miserable the last few days.

I wish I could tell you we’ve gotten a good nights sleep the last few days.

I wish I could tell you Sam is using all of his signs (language) he knows and not just “help”.

I wish I could tell you he’s on less pain meds and has less IV poles, not more.

I wish I didn’t have tell you, he will be getting a PICC line later today.

I wish I could tell you we’re getting ready to go home.

I can tell you, we were able to take out his NG tube this morning, which has been hard to keep in the last few days.

I can tell you, clinically, leaking doesn’t look like what’s going on.

I can you, all of the appropriate measures are being taken to figure out the problem.

I can tell you, Pain and Palliative is now on board. They have been a game changer for Sam in the past.

I can tell you, although he’s on a lot more meds and pretty much sedated right now, he’s finally been comfortable for the last hour.

I can you, my little boy is a fighter and he will come out on top.

Please don’t stop praying for my sweet little boy.

Faith Over Fear!

Sam Strong!

Superman Sam Update

For most part, we’ve been able to manage Sam’s pain. When the morphine wears off, he’s not a happy camper. The Intensivist went up a little on his morphine today, but he’s not quite to the full dose. Pray we can go down, not up.

He had another good night until they had to put a permanent cath in him because he went for a second time without peeing. Bummer, but not the end of the world. The rest of his night was good.

We tried yesterday and today to wean him off the oxygen, but that didn’t go so well. We’ll try again tomorrow. Because of Sam’s pain, he’s been on scheduled morphine, which can mess with oxygen levels and the bladder.

Sam had a very major surgery on Wednesday. All of what’s happening is not out of the norm. Although, it’s not fun to watch, all of the docs are happy with what they are seeing so far.

We are not out of the water for leaking. Keep praying for no leaking.

Sam Strong!

Faith Over Fear!

Overall, Things Are Good

Sam had a pretty good night.

He hasn’t been awake too much today, but when he is, he’s pretty ticked off. Pray for pain management.

From a surgical and PICU standpoint, things look good.

He hasn’t peed yet so we’ll take prayers for that.

Continued prayers for no leaking.

It’s so hard watching him have to go through all of this. My goodness, this little guy is so strong!

Faith Over Fear!

Sam Strong!

One Hurdle Cleared

THANK YOU for all your prayers! After over a SEVEN hour long operation, everything went a-okay.

Exhausting. It’s like you hold your breath for seven hours. Exhale.

And now for the next hurdle…recovery. The next few days will be an even bigger hurdle to jump.

Remember to breathe.

Please pray for no post-operation complications, specifically, no leaking.

Faith Over Fear!

Sam Strong!

Surgery Jitters

It’s now been over fifty times.

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.

Sam Strong!

Faith Over Fear!

Next Steps

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.

We believe Cincinnati will follow.

Faith Over Fear!

Sam Strong!

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.