Still Here

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.

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!

No Clear Answers, But…

…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.

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!