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!

The Plan

Sam will go down to the OR (operating room) with his surgeon and GI (tummy) doctor on Thursday to hopefully figure out what’s going on.

Until then, we do our best to keep him comfortable. Thank you Lord for Pain and Palliative Care.

Sam Strong!

Faith Over Fear!

The Power of Prayer

Not too much has changed and Sam’s still miserable, but his heart rate and blood pressure have come down a little! Thank you for your prayers!

We are at a standstill until surgery comes up with a plan. Patiently, we wait.

Until then, we’ll take all the prayers!

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!

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!

We’re home, but…

…there are more curve balls.

Overall, Sam is doing good. We are both happy to be home. There was a day when the hospital felt like home to Sam and almost for me, but that feels like a very long time ago. Thankfully we were only there for one night.

One thing I’ve learned living in this small world of a mentally complex child for the past four years is, when there’s more than one type of doctor in your child‘s room giving you news, it’s probably not going to be good.

And it wasn’t.

The hospitalist, a pulmonologist, Sam’s gastroenterologist, and his main surgeon were in the room. Let’s just say the hospitalist was not a young buck. She had clearly been practicing medicine for a very long time. When the conversation was over, and she said, “Wow, I’ve learned A LOT today!”, I didn’t know whether to laugh or cry. I laughed, of course.

Sam did not need a dilation. There was a much bigger problem found. Basically, Sam’s stomach is in his esophagus and the rest of his gastrointestinal organs are pushing up into his chest. Sam’s gastroenterologist was able to fix the problem temporarily using the scope.

He won’t be able to have his airway surgery in Cincinnati yet. We have A LOT to figure out between Sam’s doctors here and Cincinnati.

We are hoping the temporary fix will stay until we decide what the next best steps for Sam will be.

Don’t worry, as always, Sam will knock this curve ball out of the park! Making it to first base will just fine too.

Sam Strong!

Faith Over Fear!

There’s no place like home.

Cincinnati Cancelled

Well, after talking to the docs at Cincinnati they thought it would be best to cancel Sam’s surgery and reschedule.

Bummer.

It is for the best though.

I can’t imagine getting on a plane with him tomorrow morning. He’s a little better today, and off the oxygen so that’s good, but still very lethargic. He’s definitely starting to turn the corner though.

If he were a typical kid, he would have been in the hospital a few days ago and likely intubated.

As we suspected, Sam has tracheitis which is an infection in the trachea. For a typical kid, tracheitis is super rare. It’s the cursing of a having a direct access to your airway. Thankfully, for Sam, it’s always been easily treated. This means fourteen different nebulizer treatments, four times a day, an oral steroid, a little oxygen support, and mama, daddy, and/or a nurses lap.

Are we thankful for home care nurses? You have no idea.

Except for figuring out how we’ll handle the medical supplies already shipped to the hotel, we were able to cancel everything hassle and fee free. That was a huge relief.

This is a perfect example of truly living one day  at a time. Yes, it’s a bummer, but it is okay and it will be okay.

We are thankful Sam didn’t end up in the hospital and he’s on the mend.

Sam Strong.

Faith Over Fear.

Impeccable Timing

Sam seems to have impeccable timing. He got sick right before we went to Cincinnati last time. That was six months ago! It’s by far, the longest heathy stretch he’s ever had.

He’s sick right now.

We are suppose to leave on Monday morning for Cincinnati and surgery is scheduled for Wednesday.

A LOT of planning goes into traveling with Sam. We REALLY do not want to reschedule.

We’re waiting on the results from a trach culture. It’s likely tracheitis.

We’ll take some specific prayers right now.

Pray he gets better VERY quickly and we will not have to reschedule Cincinnati. Pray if it is tracheitis, it can easily be treated. Pray we don’t end up in the hospital.

Faith Over Fear.

Sam Strong.

We need this guy back!
Pretty impressive to suction a measuring cup on your mouth for a while. I guess it’s probably not too hard when you don’t breath through your mouth or nose.