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!

Dilation

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.

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.

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.

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!

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.

CT Scan

The Intensivist said, “His (Sam’s) CT scan was reassuring and disappointing, at the same time. Reassuring, because the CT scan didn’t show any emergencies. We were checking to see if his bowels had twisted. Disappointing, because it didn’t tell us what is going on.”

Long story, short, Sam started throwing up earlier and didn’t stop. It became more violent and frequent as time went on.

They have him sedated again and he will stay off his feeds for tonight. Surgery will put their heads together in the morning and discuss the next best steps.

This was Sam earlier today when things were going well. He’s wasn’t quite able to walk yet, but with his determination, it won’t take long.

Trying to walk again.

This will just be a little bump. Please Lord, let this be a tiny bump.

Thank you for your continued encouragement, prayers, and support. It would make this journey a lot harder without it.

Halt

Sam is getting a CT scan right now.

Let’s just say this day take took a sharp turn and we’re dealing with another set of issues. Please pray it’s just a fluke and they won’t find anything new.

Faith Over Fear.

Sam Strong!

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!