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.
Again, I wish I could tell you we are on the path to going home.
I wish I could tell you Sam’s feeds went well when we restarted them.
His feeds are stopped again and another plan will be made tomorrow.
Our answer with an easy fix, didn’t turn out so well. The stricture (narrowing) of his esophagus is not the only issue. Sigh. Back to the drawing board.
I can tell you, Sam is otherwise doing really well. As soon as we stopped the feeds, he seemed to feel better quickly.
He’s like a caged animal right now. We do our best to keep him entertained. Thankfully, we can take wagon and stroller rides up and down the halls and we switch out the toys every couple of days. Bottom line, we, need, to, go, home. It’s feels crazy to think we did this for over seven months.
I’ve mentally prepared myself, the PICC line will be coming home. I can still hope it won’t. More than anything, I hope they/we can figure out why he’s not tolerating his feeds.
While I know you are keeping Sam in your prayers, please pray for our other three kids too. Our love for them is no different than our love for Sam.
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!
…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.
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.
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.
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.
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.
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, butmy 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!
He got his catheter out!
He finally pooped!
No bumps of morphine!
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.
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!