Can’t Catch a Break!

This poor kid! We’ve landed ourselves in the hospital again. His pulmonologist said to bring him in if his symptoms didn’t get better. We brought him in on Tuesday morning. You would think by now, I would pack a “just in case” bag, but I really didn’t think we would be staying. Wrong.

On day two, after all the lab work ups, x-rays, and an ultrasound, Sam has two different tracheitis’ and rotavirus. His medical team and I were actually happy for the rotavirus diagnosis and not something more serious. It’s always nice to have an answer and not continue, what feels like, the guessing game.

He’s being treated for the tracheitis’ and they want to rest his tummy for a few days with IV fluids. He’s still miserable, but I am confident it won’t last too long. Hopefully, we can bust this joint in the next day or two. Hospital stays do not get easier the more you have.

On a side note, his dilation went well last week. He did need to be dilated, BUT his surgeon said we could start planning Cincinnati!!!

Thanks for praying for our sweet little boy and the rest of our family.

Sam Strong!

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!

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.

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!

Cincinnati Days #4-6

We are home, exhausted, and we successfully traveled with Sam! I don’t know if I’m quite ready to travel with him for fun, but I’ll get there.

Do you want to hear the good news or bad news first? I’d love to tell you there isn’t any bad news, but then I’d be lying.

Bad news…

On Tuesday, Sam was put under for a chest CT scan. He bounced back quickly from the anesthesia like normal. Later in the day we met with a pulmonologist and a gastroenterologist. The pulmonologist had a few areas of concern from the CT scan. She reassured us, she would look further into her concerns when she was able to see better with a scope the next day. Both doctors asked a lot questions, gathering even more information than they had already received from Sam’s docs at home.

On Wednesday, Sam had a triple scope. Skip this next part of you don’t care what a triple scope is.

The scopes/OR procedure we will do are called a flexible bronchoscopy (bronch), MLB (microlaryngoscopy bronchoscopy) and EGD (esophagograstroduodenoscopy).  We often refer to this as triple scopes. The bronch is with pulmonary and the physician uses a small flexible tube with a camera on the end to examine the upper airway, with a primary focus on the lungs. The MLB is with ENT using a small rigid instrument with a camera on the end to examine the upper airway to the level of the carina (which is where the lungs branch of left and right). The EGD is GI’s scope where they use a small tube with a camera on the end to examine the esophagus (throat), into the stomach, and the top part of the small intestine called the duodenum.

Cincinnati Children’s
Anesthesia is no big deal for me.

Sam had a harder recovery, but was put under the day before and had a lot more done with the scopes. They also dilated two parts of his esophagus. He bounced back by the end of the day.

Cincinnati
My mom’s glasses are much cuter on me. Oh, and I had a minor surgery today.

After the scopes and dilations were done,  the ENT, pulmonologist, and gastroenterologist came out to give us A LOT of information. Some old news and some new. We didn’t get the hopeful news we were expecting, and we learned things about Sam we had never known before. I wish I could say the new stuff was good, but it wasn’t.

We know Sam’s trach is not coming out anytime soon and we will be making several more trips to Cincinnati.

When we left the hospital on Monday, we left thinking Sam’s trach would never come out. It’s not the end of the world, but it is a bummer when that was our expectation.

Good news…

On Wednesday, after Sam’s scopes, the same doctor from Monday gave us a little more hope. I kept asking him if there was a chance the trach could come out someday. He gave the same gentle response each time, “We have a lot of work to do before we get there.”
We prayed for answers and I would say we certainly got many.

We were definitely at the right place. Sam’s perfect imperfections are their specialty, no doubt.

Is this hard? Yes, but there are tougher things in life. At the end of the day, we have a little boy who is well worth it all. Through it all, he continues to amaze us, and everyone around him, with his strength, courage, and so much more.

The team of doctors will meet this week to discuss a plan for Sam based on his history and their own findings. We will wait patiently to see what the next steps will be.