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Good News

Sam isn’t doing great, but he’s been off the oxygen most of the day and has no fever. As long as he behaves himself, they will do the procedure (esophageal dilation) tomorrow!

These kind of things are a balancing act when it comes to medically complex kids. It often comes down to a risk benefit analysis. And there are so many factors involved. We are incredibly blessed with the care team Sam has when we are here. It is evident they care so much about our sweet little boy, want to get him better and back home where he belongs.

The smiles are few and far between, but he did sit up a few times today and even played for a couple of minutes. We’ll take it! So far, it’s looking like everyone is wrong about the getting worse before getting better. They are going to be wrong.

Prayers for an uneventful evening for Sam. Pray he can continue to breath on his own and stay fever free. Prayers for the procedure tomorrow and all who will care for him.

Thank you for all the love and continued support for our family. We are truly blessed.

Faith Over Fear

Sam Strong

Curveball

In Sam fashion, he’s thrown us a curveball. They canceled his procedure this morning right before Sam was scheduled to go back to the OR. He tested positive for RSV. They want to see him feeling better and will do the dilation then. In the moment, putting him under anesthesia didn’t feel like the safest option and they didn’t feel comfortable sending him home.

The respiratory symptoms came on very suddenly. A lot happened and changed in a small amount of time, which isn’t abnormal for Sam. I will say, going from an outpatient dilation to being admitted, is a first for Sam. I didn’t pack a bag, but I did bring two matching sandals!

When surgery let the emergency department (ED) know we would be heading that way, the ED told the surgery nurse “Oh, Sam Grant? We know who that is. We will do what we can, to get him in safe and fast!” Mama heart melted. The way everyone has been talking, I prepared myself to spend the night in the ED. As I was about to hit ‘Publish’ on my post to ask for prayers to get a room quickly, they came in saying we were moving upstairs!! We were in the ED for less than two hours!!

Prayers for a quick recovery, a short stay, and no more curveballs. Pray for no aspiration pneumonia on top of what’s going on. Everyone keeps telling us, he’s going to get worse before he gets better. Pray against that! They are going to be wrong. Pray for continued peace and stamina for us.

Faith Over Fear

Sam Strong


He Made It

It was a rough weekend, but he made it. He’s been needing some oxygen support, but we still have room to go up. Nice job, my little warrior.

Now, prayers for his procedure today! Pray for the doctor involved. She knows Sam, but is not his primary GI doctor, which isn’t unusual for Sam when he is having a dilation. Pray for the anesthesiologist and the rest of the team who will care for Sam. Pray for no complications and that we’ll be able to come home today. Pray there is an easy fix and nothing else is going on. Pray for peace and continued strength for all of us.

Faith Over Fear

Sam Strong

Prayers to Stay Home

They were able to schedule Sam’s next procedure with his GI doctor, surgeon, and ENT for November 21st. Unfortunately, his little esophagus is seeming like it won’t wait that long.

After this last hospital stay, Sam’s respiratory doctor agreed it would be a good idea to keep him out of school until his next procedure. I get it. As much as I want Sam in school, I think the risks outweigh the benefits at the moment. We don’t need anything else on top of what’s going on medically.

Sam is really miserable right now, but we are home. His symptoms are indicating he needs another dilation. Hopefully, that’s all it is.

We called the weekend, on call GI doctor. Thankfully, instead of telling us to take him to the emergency room, she got him on the surgery schedule for Monday morning. I cannot tell you how happy I was about that. My heart was really dreading another hospital stay.

For whatever reason when Sam needs a dilation, he doesn’t tolerate his feeds. We are running Pedialyte at the lowest rate possible to hopefully keep him hydrated enough until Monday morning and avoid a hospital stay.

Please pray Sam will tolerate the Pedialyte and be able to stay home until Monday. Pray there is nothing else going on. This poor little boy could really catch a break.

Prayers for our stamina as we are tired. This fall has been hard. Prayers to calm our hearts as questions and concerns are hard to push aside right now.

I’m thankful to believe in a God who loves my little boy even more than I do, and that He will comfort and sustain all of us.

Faith Over Fear

Sam Strong

Home

We are home and very happy to be here. What we thought would only be one night, turned into five nights. And of course, as a few of Sam’s doctors mentioned, he threw a curve ball.

Although we know what to expect, you don’t get use to hospital stays. More importantly, Sam is feeling much better. The older Sam gets, the harder it gets to be in the hospital, and all the more excited he gets when we come home.

Yay!!!

We are now hoping he can make it two to four weeks for another esophageal dilation. His GI doctor wants Sam’s surgeon to be there, and Sam’s ENT plans to do a bronchoscopy. If you know anything about the medical world, scheduling three doctors at one time for a procedure is not an easy task. Prayers they can land on a time within the next two to three weeks. We do not want to be in the same situation we were in last week.

Thank you, thank you for all your prayers! They were definitely felt and answered.

Sam Strong

Faith Over Fear

An Answer

Sam’s esophagus was barely open (esophageal stricture). This is nothing new for Sam, but it’s been a very long time since he’s needed a dilation. This is the best fixable answer we could ask for. His GI doctor dilated him and wants to dilate again in two to four weeks. Poor buddy.

Praying now he will tolerate Pedialyte. Generally, when Sam is hospitalized, the doctors want him to be successful on his home feeding regimen before we go home. We move very slow to get there. I was able to convince the docs to let him be successful on Pedialyte and let us work on the formula at home. Anything to give us a few less days in the hospital.

Now Sam just needs to turn the corner so we can get the heck out of dodge!

Thank you for all your prayers! Continued prayers Sam will turn the corner, his blood pressure will come down, and that he will not surprise us with anything else.

Faith Over Fear

Sam Strong

Nothing Definitive

His CT scan didn’t show much, but his esophagus did raised some concerns. Shocking. GI will do an endoscopy and hopefully ENT, a bronchoscopy, if they can find someone.

Praying for answers, an easy fix, healing, the anesthesiologist, the doctors, the medical staff, a smooth and quick recovery.

Faith Over Fear

Sam Strong

The things that keep a mama going while living in the hospital with her child…

The other day when we came upstairs to the unit from the ED, the first nurse we saw coming out of the elevator said, “Sam, you’re back!” We went around the corner, and another nurse, yells, “Sam!”. I didn’t know whether to cry or smile with endearment. I had both emotions. Overall, endearment though.

The encouraging text.

A nurse who tells the lab tech, “When he’s feeling good, he has the best smile. A smile that will make you smile no matter what.”

The messages of comfort on my posts.

The nurse who had us four days ago, coming to check in on Sam and said, “I’m sorry you are still here. I hope they can figure things out and get you home quickly.”

Watching Sam give the tiniest glimpse of a smile only to his sister on FaceTime.

Other nurses who’ve had Sam in the past stopping in to say “Hi”, check on him, and sometimes me.

I Packed a Bag

Sam has landed himself in the hospital. I was told on Sunday afternoon by one of his GI (gastroenterology) docs to bring him in to be evaluated based off his symptoms. We decided to try make it through the night, knowing what the Emergency Department (ED) might look like on a Sunday evening.

The next morning Sam’s nurse and I headed for the dreaded ED. For the first time in five plus years, I packed a bag before we left. I finally learned, since we rarely end up coming home from an ED visit.

Thankfully, when we walked into the lobby, the green light was on, which means they were not busy. We got back fairly quickly and began all the tests, i.e. IV fluids, labs, x-ray, and ultrasound. By the afternoon we found a seemingly definitive answer. Sam was very blocked up. Poor guy.

My packing skills are sub par. I like to have sandals while I’m in the hospital. You do not want to be barefoot on a hospital floor and when your getting up several times throughout the night to care for your sick child, sandals come in handy. Sam’s home care nurse got a pretty good laugh when I went to switch to my sandals. I was so prepared! I’m blaming it on lack of sleep.

Hmmmm, something’s not right here.

The plan was to keep him for the night, “clean” him out, start feeds, and go home. We’ve never had to do a bowl clean out before. Not fun.

He had a second x-ray because he clinically looked cleaned out, but was still not turning the corner. Bummer. The x-ray showed he was all cleaned out so we hoped it was just taking him a little longer.

Here’s the thing, when you have a nonverbal kid, these kind of things are that much harder. He can’t tell us what hurts or what’s bothering him. We can only use the cues we know for when he’s not feeling good. For Sam, the cues are facial grimacing, low energy, his nystagmus gets worse, and clicking his hips. We want our energizer bunny back.

On day three, he still wasn’t turning the corner. The consensus was try start feeds and see how he does or get a CT scan to rule out anything else.

We got a CT scan and will wait for good news.

Faith Over Fear

Sam Strong

We Stayed Home

A few weeks ago, we were very close to a hospital stay. Our normally, very busy little boy was laid up on the couch, miserable for a week. He was blasted with all the hardcore stuff we can give at home and needed some oxygen support at night for a few days.

What was the illness that almost landed him a hospital stay you ask? It was likely a cold. That’s right, an illness I wouldn’t blink an eye for with my other kids. We are so thankful we didn’t land ourselves in the hospital. It’s no fun Sam or any of us.

Sam going to school or not, has been an on going discussion in our house. If it were up to Sean, Sam wouldn’t go to school at all. He thinks every time Sam goes to school, he ends up in the hospital. There is some truth to that, but there have been plenty of times we’ve been able to keep him home. Mind you, keeping him home and out of the hospital, is not an easy feat. I see Sean’s point, and also don’t want to keep him in a bubble.

I have to admit, during this last illness, keeping Sam out school crossed my mind a few times. When a common cold debilitates your child for a week, and keeps him out of school for two weeks, contemplating sending him to school or not becomes a thing. Faith over fear.

Until Sam’s doctors tell us to keep him out of school, we will continue to send him. I believe we were designed for human contact. Keeping Sam out of school might mean I am stealing from him what he can give to others. And Sam makes people better.

First Day of School Feels

The emotions attached to the first day of school were extra overwhelming this year. My daughter started high school, my middle son is now a sophomore in high school, and Sam started first grade. My babies are growing up way too fast.

Six years ago, I planned to come home from the hospital to get my other three kids off to their first day of school. I didn’t make it home from the hospital very often and was excited to see them off on their first day.

During the middle of the night, Sam went into cardiac arrest for a second time. Needless to say, when my baby died in the middle of the night, for me, leaving was not an option. There are many times this past six years I wish I could be in two different places at a time. Or three. Or four.

It slightly haunts me sometimes when I think of the nurse who told me at one point during Sam’s seven month hospital stay, “Jamie, you need to go home, Sam will not remember this, but your other kids will.” She was right and it was said out love.

I have also had several nurses tell me, “Sam would not be here today if it wasn’t for me being by his side all the time.” Talk about having to wrestle with what the best thing to do is. I still struggle with this every one in a while, but it’s neither here, nor there. I cannot change the past. We did what we thought was best for our kids at the time. That is all we can do.

It was an emotional day, but most of my tears were happy ones.