Dilation

We out!
I can’t wait to be home!

Sam was happy, but also nervous at times, when we left the hospital. He walked out with excitement, but would stop here and there, and clench my leg with with fear. I can’t imagine what was going through his head. That’s the thing about having a nonverbal child. I can read his emotions, but I also know there is so much more attached to those emotions and so much going on in that little brain of his. I would love to hear it all. Someday.

Overall, Sam has been doing well. His nights have been rough, but his days have been mostly good. Home care nurses, priceless. Both him and I are definitely happy to be home.

You couldn’t put a price tag on when Sam saw his Abby for the first time, in over six weeks. Let me remind you, Abby wanted nothing to do with having a little sister or brother five years ago. The bond they have now, is priceless.

Ahhh, home sweet home. My Elmo desk, and my spoons and forks.

Most of the time he’s happy with his spoons or forks at his favorite spot in the house, his Elmo desk. Or dancing in the living room to his toddler music.

Sam will have another esophageal dilation tomorrow. Unfortunately, for Sam, this is a routine procedure. We know the drill. I’m not saying the drill is easy, but we definitely have it down to a science. If you’ve ever had a child have surgery and remember the process, it’s quite the ordeal. When you’re asked to be on a committee to make the patient/family experience better, pre and post op (before and after surgery), you must be a be veteran. Yep, true story.

Pray everything goes well tomorrow. Pray for Sam’s surgeon, nursing staff, and anesthesiologist.

As always, Sam Strong and Faith Over Fear!

Happy Thanksgiving! Remember, you can always find something to be thankful for. Focus on what’s good in your life. I promise, there’s something.

We Out!

We are bustin’ this joint today!!!!! Forty-four, unexpected days later and we get to go home!!!! I am overwhelmed with excitement. I cannot wait to see Sam’s reaction when we walk though the door.

A friend shared this with me today. God didn’t promise a storm free life, but he promises the storms won’t destroy us. I cannot agree more.

Thank you, thank you, thank you for your support and prayers!

Sam Strong!

Faith Over Fear!

I’m ready to bust this joint!

A Solid Two Days

I’m happy to report, Sam’s had two great days in a row! Sam is back to swooning all who enter the room. The rough days were due to ANOTHER infection brewing. Ugh. Darn hospitals. Thankfully, we caught and treated it quickly.

The bleeding is less. Although there is still differing of opinions on where the blood might be coming from, it’s not a huge concern right now. They are watching his hemoglobin levels, which have been overall good. If the blood continues, he will be simultaneously scoped by Pulmonology, ENT, GI, and Surgery, which we can come back for.

They have been able to control his blood pressure, with meds we can go home on, and he has been pooping. Today, for the first time in almost six weeks, he did not have any retching episodes! All good things!

The Care Conference could not have gone any better. It’s a bit emotionally overwhelming to sit in a room with several people who have played a role in saving Sam’s life the past four years. We have a good, solid plan that everyone was able to agree on. The tears were unavoidable as they thanked me for the role we’ve played at home, in caring for Sam. When they say, it takes a village, that might be an understatement when it comes to Sam.

I decided to save the best news for last. Drum roll, please. If Sam “follows the rules”, we’ll be home this weekend without the PICC line! Hallelujah!

Sam Strong!

Faith Over Fear!

Peace Even When…

On top of everything else going on, Sam developed a cold. Poor buddy can’t catch a break. It has been a rough few days. Who am I kidding, it’s been a rough thirty-two days. To be on the safe side, they did a nasal swab and trach culture. The only infection that showed is rhinovirus, aka, the common cold. Big deal, you might be thinking. At least that’s what I thought/think when my other kids caught/catch a cold.

For Sam, the common cold is rough. He’s miserable. We are constantly suctioning his trach (breathing tube). He retches a lot more because it’s hard for him to control all the extra secretions. He is also at a much greater risk for aspiration, pneumonia, and/or bronchitis. That’s where the hard work comes in for us. With continuous monitoring and safe suctioning, we can prevent these infections. Thankfully, he usually gets through the cold without complications, but it’s not easy.

Sam’s next dilation is scheduled for tomorrow at 2:45pm. As of now, he’s still scheduled. The doctors today, said if things get worse, he will have to get rescheduled. Pray for a quiet, restful night, for the cold to be short lived, and for him to be healthy enough for surgery.

Unfortunately, we are still suctioning blood from his trach. In the morning, ENT will do another bronchoscopy. This way, if they find anything, they can take care of it in surgery tomorrow afternoon.

On a good note, he is up to sixteen milliliters per hour with his feeds and we have not had to stop them!

Although this is hard, and trust me, I have my moments, for the most part, I am okay. Even in all this chaos, I am at peace. I truly believe, the more you lean on and trust in Him, the more you will feel an overwhelming peace even in the chaos.

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!

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!

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!

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!