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!
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…
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!
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!
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!
