Tag: Esophageal Stricture

Dilation

Published on by Jamie Grant6 Comments
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.

  • My Abby!!
  • I love my Abby!
Home Sweet Home
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.

  • Playing with my Abby.
  • Watch in’ football with my people.

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.

Peace Even When…

Published on by Jamie Grant4 Comments

On top of everything else going on, Sam developed a cold. Poor buddy can’t catch a break. It has been a rough few days. Who am I kidding, it’s been a rough thirty-two days. To be on the safe side, they did a nasal swab and trach culture. The only infection that showed is rhinovirus, aka, the common cold. Big deal, you might be thinking. At least that’s what I thought/think when my other kids caught/catch a cold.

For Sam, the common cold is rough. He’s miserable. We are constantly suctioning his trach (breathing tube). He retches a lot more because it’s hard for him to control all the extra secretions. He is also at a much greater risk for aspiration, pneumonia, and/or bronchitis. That’s where the hard work comes in for us. With continuous monitoring and safe suctioning, we can prevent these infections. Thankfully, he usually gets through the cold without complications, but it’s not easy.

Sam’s next dilation is scheduled for tomorrow at 2:45pm. As of now, he’s still scheduled. The doctors today, said if things get worse, he will have to get rescheduled. Pray for a quiet, restful night, for the cold to be short lived, and for him to be healthy enough for surgery.

Unfortunately, we are still suctioning blood from his trach. In the morning, ENT will do another bronchoscopy. This way, if they find anything, they can take care of it in surgery tomorrow afternoon.

On a good note, he is up to sixteen milliliters per hour with his feeds and we have not had to stop them!

Although this is hard, and trust me, I have my moments, for the most part, I am okay. Even in all this chaos, I am at peace. I truly believe, the more you lean on and trust in Him, the more you will feel an overwhelming peace even in the chaos.

Another Dilation

Published on by Jamie Grant6 Comments

On Monday night we strolled Sam down to surgery again. They discovered his esophagus had narrowed down quite a bit since the last dilation done, only about a week prior. It wasn’t as strictured as the the first time, but enough to have it difficult for things to pass through. They dilated again.

He rested overnight and started feeds the next day. He’s on day two of feeds. The feeds were going well, up until later this evening. We decided not go up on his feeds at the designated time, and try keep them running at the slow rate they are. He’s sleeping well now, without any symptoms. Let’s hope, pray, and believe he can continue to go up on feeds without having to stop them.

Sam’s Surgeon has decided to schedule another endoscopy for early next week. He will take a look and dilate his esophagus again if needed. For whatever reason, Sam’s esophagus thinks it needs to close up post surgeries. We may have to continue this process, which is not new to Sam, but not fun for him either. Pray his esophagus stays open and will need minimal dilations.

Home. I’ve decided not to bring it up anymore. Sam has a great team, who has his best interest at heart. Home will happen when it’s best for Sam.

Faith Over Fear!

Sam Strong!

Still Here

Published on by Jamie Grant5 Comments

Again, I wish I could tell you we are on the path to going home.

I wish I could tell you Sam’s feeds went well when we restarted them.

His feeds are stopped again and another plan will be made tomorrow.

Our answer with an easy fix, didn’t turn out so well. The stricture (narrowing) of his esophagus is not the only issue. Sigh. Back to the drawing board.

I can tell you, Sam is otherwise doing really well. As soon as we stopped the feeds, he seemed to feel better quickly.

He’s like a caged animal right now. We do our best to keep him entertained. Thankfully, we can take wagon and stroller rides up and down the halls and we switch out the toys every couple of days. Bottom line, we, need, to, go, home. It’s feels crazy to think we did this for over seven months.

I’ve mentally prepared myself, the PICC line will be coming home. I can still hope it won’t. More than anything, I hope they/we can figure out why he’s not tolerating his feeds.

While I know you are keeping Sam in your prayers, please pray for our other three kids too. Our love for them is no different than our love for Sam.

Faith Over Fear!

Sam Strong!

An Answer, With…

Published on by Jamie Grant11 Comments

an easy fix! Thank you Lord!!

Sam needed a dilation. This is what we were all hoping for and the best case scenario. His esophagus was pretty much shut. A thing Sam likes to do after surgeries and in general. They didn’t dilate all the way being only three weeks post-op. Later, when he heals more, if he needs another one, we can come back for that. And that, is a one day ordeal, which is something we are accustomed to in our world.

He will rest tonight and we will slowly introduce feeds tomorrow. If all goes well, we will be here a bit longer, but will get to leave the PICC line here. Please, let us leave the PICC line here, Lord. Being on “PICC line watch” is really hard and especially hard with very busy little boy.

We also figured out why the blood is coming from his trach (breathing tube)! This morning, before surgery, ENT did a bronchoscopy. The blood is from suctioning past his breathing tube, something that shouldn’t be done too much. His airway is irritated, but it will heal.

Believing for no more surprises and the feeds to go well.

Thank you again for your prayers! Keep em’ coming!

Faith Over Fear!

Sam Strong!

Surgery Jitters

Published on by Jamie Grant13 Comments

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

Published on by Jamie Grant6 Comments

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!

Curve Balls…

Published on by Jamie Grant7 Comments

…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.