Dilation #5

Sam will have another dilation tomorrow. Yes, he’s had WAY more than five dilations, but I started the count over after his last major surgery. We are hoping and praying he won’t need as many as the first time around.

In the four plus years, Sam’s had a trach (breathing tube) and feeding tube, he hasn’t had to have a granuloma cauterized (burned off), which is pretty good. This is basically skin starting to grow where it shouldn’t. Before the dilation, he’ll have a tracheal granuloma cauterized. Typically, this can be done in the clinic, but Sam’s ENT thought it would be better for Sam under anesthesia, also knowing he could do it alongside one of Sam’s dilations. We were very thankful for this. Sam’s nurse and I were not looking forward to having to hold him down for that procedure!!

We are also thankful, Sam will get his feeding tube changed in surgery tomorrow. As I’ve said before, this is a procedure he gets done routinely every two to three months. It now takes three, sometimes four of us to hold Sam down. As soon as he sees an x-ray table now, his little body clenches me with fear. We have to literally peel him off of me, to get him on to the table. It’s a fairly quick procedure, but I’m sweating by the time it’s over. Sam’s one tough cookie, so when he’s sobbing hysterically throughout the procedure, we know it must be painful.

We are thankful to be able to knock out three procedures in one tomorrow!

We’ll take some extra prayers tomorrow for Sam’s Surgeon, ENT, and anesthesia team. Pray for a smooth and quick recovery.

Sam Strong!

Faith Over Fear!

No News is Good News

Sam’s dilation went well. His esophagus was VERY strictured (narrow), almost shut again. The dilation was definitely needed.

As in the past, as soon as Sam gets dilated, his spitting and retching almost instantaneously stop. These are usually the tell tale signs he needs a dilation. Unfortunately, there isn’t anything else that can be done, except put him under anesthesia, and stretch his esophagus.

As of now, surgery will wait to hear from us. IF Sam gets symptoms, they will put him on the schedule as needed. With Sam’s thirty-five plus esophageal dilations, we’ve only been wrong once. There are many, but one great thing about Sam’s care team, is they trust our judgment. They listen, really listen to us. I call the surgery scheduler, who I’m on a first name basis with, and they get him on the surgery schedule ASAP.

We are going to believe Sam won’t need as many dilations as the first time, and even better, he won’t need anymore.

I’ll leave you with a moment from a day in the life of Superman Sam. You just can’t make this stuff up!

We were sitting in “school” with Sam. When Sam does distance learning, we prop his iPad on the kitchen island and he sits on one of the bar stools. I usually stand next to him. His nurse will stand or sit on the stool on the other side of him. All of the sudden, I thought I noticed something about Sam’s mouth. Does he have a missing tooth?!?! With Sam’s camera on, I didn’t want to disrupt school.

As soon as school was over, Sam’s nurse and I pried open his mouth. Yes, we had to do this. It’s the only way to be able to see inside his mouth. Yep, I saw it right the first time, a bottom, front, tooth, MIA! What?!?! Where did it go?!?! Did he swallow it?!?! Was it in his bedroom somewhere?!?! How did I not know he had a loose tooth?!?!

Mom guilt, setting in. And then, that good ole self talk. Stop it!! You have a lot more things to keep track of in the world of Sam, then a loose tooth!!! It’s not a big deal!! He’s clearly okay!!

Mom guilt. Raise your hand if you’re a mom and have had mom guilt recently. Okay, I’m feeling better already. It’s so silly. Why do we do this to ourselves? Because, we’re human.

Give yourself grace mama. To me, giving yourself grace is acknowledging the situation, doing what you can to rectify it, then moving on, and letting it go. It’s knowing, we are not perfect.

From the mama with typical children, to the mama with special needs children, to the mama of a prodigal, and everything in between, give yourself grace, because we all need it, every single day.

Sam Strong!

Faith Over Fear!

We Out!

We are bustin’ this joint today!!!!! Forty-five unexpected days later and we get to go home!!!! I am overwhelmed with excitement. I cannot wait to see Sam’s reaction when we walk though the door.

A friend shared this with me today. God didn’t promise a storm free life, but he promises the storms won’t destroy us. I cannot agree more.

Thank you, thank you, thank you for your support and prayers!

Sam Strong!

Faith Over Fear!

I’m ready to bust this joint!

A Solid Two Days

I’m happy to report, Sam’s had two great days in a row! Sam is back to swooning all who enter the room. The rough days were due to ANOTHER infection brewing. Ugh. Darn hospitals. Thankfully, we caught and treated it quickly.

The bleeding is less. Although there is still differing of opinions on where the blood might be coming from, it’s not a huge concern right now. They are watching his hemoglobin levels, which have been overall good. If the blood continues, he will be simultaneously scoped by Pulmonology, ENT, GI, and Surgery, which we can come back for.

They have been able to control his blood pressure, with meds we can go home on, and he has been pooping. Today, for the first time in almost six weeks, he did not have any retching episodes! All good things!

The Care Conference could not have gone any better. It’s a bit emotionally overwhelming to sit in a room with several people who have played a role in saving Sam’s life the past four years. We have a good, solid plan that everyone was able to agree on. The tears were unavoidable as they thanked me for the role we’ve played at home, in caring for Sam. When they say, it takes a village, that might be an understatement when it comes to Sam.

I decided to save the best news for last. Drum roll, please. If Sam “follows the rules”, we’ll be home this weekend without the PICC line! Hallelujah!

Sam Strong!

Faith Over Fear!

Sam…

I’m going to spare you the many details of the last few days. Sam did have his dilation, and again, it was needed. Since then, there have been new reasons to keep everyone on their toes around here. I’ve had more than a few doctors and specialists tell me, they were pretty worried yesterday.

Today was a better day. Period. End of sentence.

Pray they will be able to figure out the source of the bleeding, or let’s believe it will stop all together. Pray for Sam to poop. 💩 Pray for his blood pressure. Pray for everyone who is on Sam’s care team and that they will all be able to make it to his Care Conference they are working on setting up.

Enough about that.

Right now, I am thankful for…

…Sam having a better day.

…doctors who lose sleep over my son.

…nurses who advocate for my son.

…being able to see my daughter yesterday.

…a family who continues to support us in so many different ways.

…being able to see my husband today.

…friends, who I know I can lean on.

…Physical Therapy, Occupational Therapy, and Music Therspy in the hospital.

…the Ronald McDonald House Charity.

…all of you who continue to pray for Sam and the rest of my family.

Okay, okay, I’ll stop.

Faith Over Fear!

Sam Strong!

Peace Even When…

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.

Second by Second

Sam’s day has been quite rough. Man, what a roller coaster. Just when we all think he’s turning the corner, things take a sharp turn in the wrong direction.

Some symptoms are new and others have been off and on since he’s been here. This is nothing. It’s just a fluke. He will get through this.

Please pray for my little fighter. Pray his blood pressure can be controlled. Pray for no more red blood coming from his trach (breathing tube). Pray for less secretions. Pray his lungs are clear on the x-ray results. Pray for no more throwing up. Pray for his heart rate to come down. Pray for his medical team. Pray for his momma, daddy, sister, and brothers too. Pray they can get things figured out and we can go home. Pray for no more sharp turns.

No Clear Answers, But…

…we have a good plan in place. Here is an extremely summarized version of the latest.

They didn’t find anything on the endoscopy. Based off Sam’s symptoms, and stopping and starting his feeds, they have narrowed down the problem to his feeds. I’ll spare you all of the medical jargon and Sam’s anatomy talk.

They will rest his bowels for the next day or so and very slowly introduce feeds. If the feeds go south again, they will do another endoscopy through his j-tube (feeding tube).

Otherwise, it may be Sam’s little gut needs more time, which means, we would be able to go home, but with a PICC line to make up for lost nutrition. Sigh. Okay, time for that good olé self talk.

The PICC line would only be temporary and we would be able to go home, where both Sam and I need to be.

On a good note, Sam had an overall good day. His strength and determination never ceases to amaze me.

Faith Over Fear!

Sam Strong!

Another Test

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.

Faith Over Fear!

Sam Strong!