Another Dilation

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!

An Answer, With…

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!

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.

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!

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!