As Promised

I have been writing this post off and on since July. Where did the summer go?! And now we’ve already been in school a few months?!

Since our last hospital stay WAY back in May, life was overall good for Sam until August hit. He was mostly healthy and doing all the things. And when I say, all the things, I mean ALL the things. That being said, I will update on the not so great stuff and end with the great things we did this past summer.

I think the reason I have been struggling to continue writing this post is because I was so excited to have only good news. I’ll try be a bit brief with the not so great stuff so we can focus on the super fun summer we had with Sam.

We’ve known since Sam was a baby, he “might” need an eye surgery to correct his lazy eyes. Yes, that’s plural for Sam. We have tried patching off and on over the years. His ophthalmologist let us know at his last appointment, Sam will need the eye surgery. We plan to schedule this after Christmas.

One of Sam’s many specialists is immunology. He only has this appointment once a year now. To make a long story short, one of his labs was very off at his last appointment. Both his immunologist and pediatrician thought the off labs might be the “c” word. Thank you Lord, after oncology looked over his labs, they were reassured cancer was not the case. This left everyone scratching their heads on which specialist we should see. It was narrowed down to nephrology. Thankfully, this is already a specialty Sam sees because of his hypertension (high blood) issues.

We had our appointment with nephrology and did lots of other testing to hopefully rule out chronic kidney disease (CKD). At this appointment, his nephrologist said, either way they would have to treat the way off lab results as they are at “too dangerously of a high level”. Unfortunately, we did recently find out Sam has CKD. The CKD is in the early stage so that is a bonus. We will have to see nephrology more often now so they can keep a close eye on his kidneys.

In the past month, Sam has also had a few seizure like episodes. He saw a neurologist for this and confirmed the episodes were likely seizures. He prescribed Sam a rescue med for if the seizures last more than five minutes. He will have an MRI and EEG done soon to rule anything serious. We are confident and praying there is nothing serious.

Sam will have endoscopy to check on his esophagus and tummy. We will be able to coordinate his MRI with the endoscopy. I try very hard to coordinate sedation procedures/surgeries when I can with this complicated little man! Just call me the CEO of Sam Inc.!

Sam gets poked a lot as is, but the past few months have been more than normal. He was pretty sick for a week in October so this made for even more poking. Thankfully we were able to schedule an appointment rather than having to take him to the emergency room like normal. After all the testing, he ended up being super constipated and had tracheitis. He was pretty miserable for about a week, BUT we stayed out of the hospital!

We will shoot for the Spring to go to Cincinnati again and hopefully get the hole in Sam’s airway fixed. Sam’s pulmonologist suggested we wait till after winter to go. Cincinnati thought that was a good idea too.

Now, let’s move on from the cruddy stuff and into the good stuff! My mama heart was full with the many firsts Sam had this summer.

Fun at Como Zoo.

He was finally cleared by his doctors to go back to school. He started summer school two days a week and loved it.

Sam had only been into a store one time in his life and it was brief. We decided to go big or go home for his first real trip to a store. Yep, the Mall of America. He was mostly in awe of the lights and high ceilings. We went to a dinosaur exhibit next to the mall. Let’s just say the mall was much more interesting.

We celebrated Sam’s fifth birthday! Swimming isn’t the best birthday activity for Sam, but he loves the water so much! If he didn’t have a trach, I’m pretty sure he would be in fish in the water. Some day!

Before Sam was born, we spent A LOT of time at our family cabin. Since he’s been born, we have brought him on a day trip once, there and back. Traveling with a medically complex child is no joke. Being on a lake with a child with a trach, again, no joke. It always feels a little odd when someone asks what would happen if Sam fell in the water and our response is, “He would most likely die.” We were also able to go to a friend’s cabin twice.

Thank you to all of you who have collected pop tabs for us! We didn’t turn them in last year because of Covid, but had a lot to throw in the bin at the Ronald McDonald House Charities. Sam thought it was pretty fun to throw the pop tabs in the big bin. Although, they probably wouldn’t admit it, I think Will and Abby thought so too.

We took a spontaneous trip to Duluth. This was a really big deal for us and we were so glad we did. We had a blast!

Sam’s first day of Kindergarten! No words from this mama for this emotional day.

Another spontaneous thing we did was go to a Gopher Football Game. Sam didn’t like when anyone scored a touchdown. He got pretty scared with all the yelling, but overall had a great time.

He, of course, loved the apple orchard.

Sam’s first time EVER in a grocery store! I wondered what people were thinking when I was overly excited to put him in the cart. It’s funny what we take for granted sometimes. I remember when my other kids were little I was happy to leave them at home when it came to grocery shopping.

I can’t imagine what people were thinking when we taking all the pictures.

We were hoping Sam would be over his sickness before Halloween. He was back to himself the day of Halloween! He has been out on Halloween, but hasn’t been trick-or-treating before, partly because of being immunocompromised and partly because he can’t eat the candy anyway. I thought he would get a kick of people putting something into his bucket. I was wrong. The first house we brought him to, he tried to go inside. He got pretty sad when he realized we couldn’t go inside. This is where it’s okay to laugh. We did. We’ll try again next year! We had one neighbor who had bubbles and something else for Sam knowing he can’t eat the candy. That little gesture made my heart flutter.

We all have stuff, stuff that makes life hard. We can make a choice to see the beauty or focus on the pain. The enemy likes us to focus our time and energy on the pain. I believe when we see His beauty in the pain, our strength gets stronger and our hearts get happier.

Sam Strong and Faith Over Fear!

HOME!

After seven days, Sam was able to come home! We are very thankful he is feeling better and it was a short stay, in our world.

If I added correctly, Sam has spent ten plus months of his life in the hospital and he’s only four. That also means he’s spent much more of his life at home. I’m not discounting the time in the hospital. I’m also not saying tears aren’t shed from exhaustion and other things on my part and pain and exhaustion on his. I’m not saying this isn’t REALLY, REALLY hard. I’m not saying to ignore the bad, but in my experience when we focus on the good instead of the bad, it’s harder for the negative to steal your joy.

FaceTime allowed me to stay on the phone with my daughter, off and on, for over three hours to “help” her bake a cake. She had some bumps along the way, but she didn’t give up. It was still pretty good four days later, when I was home to try it. I was a proud mama.

Every time we’re here, most of my family adapts with ease.

Every time we’re here, we meet more great nurses, doctors, respiratory therapists, etc.

Every time we’re here, I learn new tricks to help Sam and I adapt to living in a hospital.

Every time we’re here, Sam steals more hearts.

With an IV in, Sam can only use one hand. I get mesmerized by how he uses his one hand to play when he starts feeling better. The smarty pants even uses his mouth to push toys and objects in place.

This is the life of Sam. We didn’t choose it, but we have learned to adapt, be flexible, and make lemonade out of lemons. And this guy is SO worth it all.

We Out!

We are bustin’ this joint today!!!!! Forty-five 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!

Another Test

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.

Faith Over Fear!

Sam Strong!

One Hurdle Cleared

THANK YOU for all your prayers! After over a SEVEN hour long operation, everything went a-okay.

Exhausting. It’s like you hold your breath for seven hours. Exhale.

And now for the next hurdle…recovery. The next few days will be an even bigger hurdle to jump.

Remember to breathe.

Please pray for no post-operation complications, specifically, no leaking.

Faith Over Fear!

Sam Strong!

Surgery Jitters

It’s now been over fifty times.

Over fifty times his little body has been put under anesthesia. Over fifty times needles, scalpels, scopes, and more have messed with his insides and outside. Over fifty times of watching my little boy slowly roll away on a hospital bed.

Just because we have done it over fifty times, doesn’t mean it gets any easier. If anything, it gets harder. The older Sam gets, the more aware he becomes of what’s going to happen. He’s a smart little boy, knows the routine, and knows it’s not going to feel good. That whole white coat syndrome you hear about, it’s a thing.

This happy little guy has been through so much. He probably won’t remember all of it, but this mama and daddy’s hearts do and will.

We can worry or trust God, but we can’t do both. We choose to trust in a God we believe has a perfect plan for Sam.

Pray for our little Superman on Wednesday. Pray for our surgery jitters. Pray for the surgeons hands, for his anesthesia team, and all the other medical staff who will be involved. Pray Sam doesn’t throw any curve balls, as he’s unfortunately infamous for. Pray for a smooth and quick recovery.

Sam Strong!

Faith Over Fear!

Next Steps

All the stars have aligned or in my opinion, God had a plan.

Overall, Sam’s been doing well. The temporary fix seems to be holding up for the most part.

I can’t help but think there was a reason we had to cancel the first trip to Cincinnati. If we would have gone and Sam would have had his airway surgery, the likelihood of the surgery being successful would be slim to none with Sam’s new diagnosis.

Again, as we suspected, the second trip was canceled as well.

If I go into the details, I’ll have to write a novel.

Our surgeon here consulted with the main surgeon in Cincinnati.

Sam is scheduled to have surgery here on September 30th. It’s a big one, with a six hour OR time slotted and a five to seven day stay in the hospital. That’s without complications.

Minor surgeries, which have been the bulk of Sam’s now fifty plus surgeries, have always gone really well for Sam. Major surgeries, on the other hand, haven’t always gone as well.

This surgery will go well, without complications.

Are we nervous? No doubt! We choose not to worry about the things we cannot control.

He will be in the best hands and we believe this will be a final fix to Sam’s GI issues.

We believe Cincinnati will follow.

Faith Over Fear!

Sam Strong!

We’re home, but…

…there are more curve balls.

Overall, Sam is doing good. We are both happy to be home. There was a day when the hospital felt like home to Sam and almost for me, but that feels like a very long time ago. Thankfully we were only there for one night.

One thing I’ve learned living in this small world of a mentally complex child for the past four years is, when there’s more than one type of doctor in your child‘s room giving you news, it’s probably not going to be good.

And it wasn’t.

The hospitalist, a pulmonologist, Sam’s gastroenterologist, and his main surgeon were in the room. Let’s just say the hospitalist was not a young buck. She had clearly been practicing medicine for a very long time. When the conversation was over, and she said, “Wow, I’ve learned A LOT today!”, I didn’t know whether to laugh or cry. I laughed, of course.

Sam did not need a dilation. There was a much bigger problem found. Basically, Sam’s stomach is in his esophagus and the rest of his gastrointestinal organs are pushing up into his chest. Sam’s gastroenterologist was able to fix the problem temporarily using the scope.

He won’t be able to have his airway surgery in Cincinnati yet. We have A LOT to figure out between Sam’s doctors here and Cincinnati.

We are hoping the temporary fix will stay until we decide what the next best steps for Sam will be.

Don’t worry, as always, Sam will knock this curve ball out of the park! Making it to first base will just fine too.

Sam Strong!

Faith Over Fear!

There’s no place like home.

Curve Balls…

…are a constant when it comes to Sam.

We are now less than two weeks away from surgery.

He’s been having some rough days off and on. His docs had put him on all the stuff a few days ago as a precautionary until surgery. Usually the stuff kicks in fast.

Tonight got tough.

After a phone call, his pulmonologist wanted us to bring him in. No, he’s fine. He’s been much more sick than this and we’ve kept him home. “Do you think he needs a dilation?”, she asked. “Yeah, that’s what I’m starting to think.”, I responded. She ends our conversation with, “I’m sorry.”

She knows. She knows what Sam’s been through. She knows what we’ve been through. She’s knows it better than most. She knows it’s not easy to pack him up and bring him in. She knows he’s likely okay to stay home.

She’s right though. She also knows if he’s inpatient, it will be A LOT easier and faster to get him into the operating room.

She knows his surgery got canceled a few weeks ago. She knows his surgery is rescheduled in less than two weeks.

She called me back before we left our house. “I talked to Dr. Surgeon and Dr. Gastroenterologist. [They both have names, but I like to be respectful of their privacy.] They said between the two of them, they will get Sam on the OR schedule in the morning.”

We are now sitting in the Emergency Room, waiting for a room upstairs. Waiting. Waiting. Waiting. Waiting. Waiting. When you are in the hospital, there is so much waiting. Covid makes the wait even longer.

The lV is in without too much effort. Whew. Sam isn’t always the easiest poke. Although if you could hear him cry, they would have probably heard him a few rooms down. It’s sure a lot more heart braking to watch your child scream, but no sound comes out. It’s something you never really get use to.

Maybe I’ll get some sleep tonight. I just need a little.

He’s sleeping now. That’s all that matters.

Now I know I’m not the only one praying for my family and my sweet little boy.

Tomorrow I will have good news for you.