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.

Can’t Catch a Break!

This poor kid! We’ve landed ourselves in the hospital again. His pulmonologist said to bring him in if his symptoms didn’t get better. We brought him in on Tuesday morning. You would think by now, I would pack a “just in case” bag, but I really didn’t think we would be staying. Wrong.

On day two, after all the lab work ups, x-rays, and an ultrasound, Sam has two different tracheitis’ and rotavirus. His medical team and I were actually happy for the rotavirus diagnosis and not something more serious. It’s always nice to have an answer and not continue, what feels like, the guessing game.

He’s being treated for the tracheitis’ and they want to rest his tummy for a few days with IV fluids. He’s still miserable, but I am confident it won’t last too long. Hopefully, we can bust this joint in the next day or two. Hospital stays do not get easier the more you have.

On a side note, his dilation went well last week. He did need to be dilated, BUT his surgeon said we could start planning Cincinnati!!!

Thanks for praying for our sweet little boy and the rest of our family.

Sam Strong!

The 10th One

Sam spent his first seven months of his life in the hospital. Since then, he has spent a lot of time in and out of the hospital. Unfortunately, it’s the nature of being a child with a trach (breathing tube). I can’t even begin to tell you the amount of gifts our family received while Sam was in the hospital, and still receive. The outpouring was and is overwhelming in the most heart warming way.

Of the many gifts you receive when you have a child in the hospital, the ones that are tailored to your child’s diagnosis or situation hit you in a way that goes deep into the heart. The gift says, “I have been in your shoes.” For a moment, you don’t feel completely isolated. Someone else has been there. This is a powerful thing.

Jack’s Basket and Fiona’s Hope were those gifts for me. Jack’s Basket is a nonprofit that gives baskets to families to celebrate a diagnosis of Down Syndrome. Enough said. Fiona’s Hope gives baskets to families who have had an extensive stay in a hospital with their child. Again, enough said. To find out more about these two incredible organizations, click on their names.

A long time ago, these two organizations sparked something in me. For over three years, I have been dreaming of giving a basket to families who will take their baby home from the hospital with a trach (breathing tube). A basket that says, “I have been in your shoes.” A basket that says, “You are not alone.” A basket that says, “Although our stories are uniquely different, we share this commonality.”

One year ago in March of 2020, just when Covid was starting to invade us, I delivered my first basket. My heart was overjoyed to be able to bless a family with items that clearly show, they are not the only ones on this journey.

Now, almost a year later, I recently delivered my eleventh basket!!! It’s crazy to think that many babies have gone home with a trach just in Minnesota this past year. The curve balls thrown at each of these families are unimaginable. Each story is unique, but share one common theme.

So, what’s the big deal about the tenth one, you ask? Well, I told myself, after I am able to deliver ten baskets, I have to put it out there. So, here I go. My hope is to be able to bless as many families as I can who have been dealt this difficult, but incredibly rewarding, hand of cards.

Each basket is filled with items that have been or are useful to us. Do you want to see what’s inside the basket?! Click here to see the new page I added to find out more about what’s in each basket.

If you would like to request a basket or donate items, click here to contact me.

If you would like to make a monetary donation, click here. At this time, the donation you make will not be tax deductible. I am in the process of starting a 501(c)(3) nonprofit organization and when that happens your donations will be tax deductible.

Although I feel nervous about “putting it out there”, I am extremely excited at the possibility of being able to brighten a day of more families whose lives have taken a turn down an uncertain road. Things have moved a lot faster than I anticipated!! This week, I will be reaching beyond Minnesota!!

Dilation #5 Update

I suppose no news is good news, right? For the most part, yes.

Sam’s dilation went very well. His esophagus was very narrow, but not as narrow as the last time he got dilated. Good news!

Again, we wait. If symptoms begin, we call surgery and they get Sam on the schedule. Generally, his symptoms consist of retching (throwing up), which start to become more frequent and violent as time goes on. Eventually, he’s not able to control his secretions, so he spits a lot too. Basically, he still creates secretions (spit), but if his esophagus is narrow enough or closed, there is no other place for the secretions to go except out his mouth. This makes for a very nauseous little boy. Poor guy.

After Sam’s dilation, his surgeon discussed WHEN Sam is able to go three months without a dilation, then he’ll plan to get Sam on the schedule to look at his esophagus. If things look good and open, we wait again. When Sam can go for at least six months without a dilation then his surgeon will feel good about us planning another trip to Cincinnati to hopefully get his airway fixed.

Sam also had a granuloma cauterized or how I like to make it more visual for you, the extra skin on the hole in his throat, sizzled off by a fire pen. This went well too. Although, it was a lot to look at after. For the next week or so, we cleaned gross puss and what looked like black soot around his trach site. Yuck and again, poor guy! Thankfully, it all healed very nicely.

The day after Sam’s dilation he seemed like he was recovering well. When he woke up the next morning, things went south very quickly. He ended up with a tracheitis. He had a couple of very rough days. We were able to catch this right away and treat the nasty, airway bacterial infection. Along with our hard work and the antibiotic nebs, like magic, Sam was back to his lively self in no time. Thank you for home care nurses!

Except for the spitting. No, not another thing, little buddy. His demeanor was back to his norm, but he wouldn’t swallow his secretions. Per Surgery we should bring him in to be evaluated in the next couple of days, unless things got worse, which for Sam means going to the ED (Emergency Department). Not the dreaded ED. Besides him not swallowing his secretions, he seems totally fine. Sometimes I wish they had another place for complex kids to go in these situations.

The next day, after talking with Sam’s Pulmonologist, she too thought he should be evaluated. Bummer.

We had planned to take him in early the next morning, knowing the less busy times of the ED. Sam had different plans. Good plans! When he woke up, the spitting had stopped!!! Thank you Lord!!!

Sam has been back to his spunky self, continuing to teach us what life is all about.

Sam Strong!

Faith Over Fear!

Dilation #5

Sam will have another dilation tomorrow. Yes, he’s had WAY more than five dilations, but I started the count over after his last major surgery. We are hoping and praying he won’t need as many as the first time around.

In the four plus years, Sam’s had a trach (breathing tube) and feeding tube, he hasn’t had to have a granuloma cauterized (burned off), which is pretty good. This is basically skin starting to grow where it shouldn’t. Before the dilation, he’ll have a tracheal granuloma cauterized. Typically, this can be done in the clinic, but Sam’s ENT thought it would be better for Sam under anesthesia, also knowing he could do it alongside one of Sam’s dilations. We were very thankful for this. Sam’s nurse and I were not looking forward to having to hold him down for that procedure!!

We are also thankful, Sam will get his feeding tube changed in surgery tomorrow. As I’ve said before, this is a procedure he gets done routinely every two to three months. It now takes three, sometimes four of us to hold Sam down. As soon as he sees an x-ray table now, his little body clenches me with fear. We have to literally peel him off of me, to get him on to the table. It’s a fairly quick procedure, but I’m sweating by the time it’s over. Sam’s one tough cookie, so when he’s sobbing hysterically throughout the procedure, we know it must be painful.

We are thankful to be able to knock out three procedures in one tomorrow!

We’ll take some extra prayers tomorrow for Sam’s Surgeon, ENT, and anesthesia team. Pray for a smooth and quick recovery.

Sam Strong!

Faith Over Fear!

No News is Good News

Sam’s dilation went well. His esophagus was VERY strictured (narrow), almost shut again. The dilation was definitely needed.

As in the past, as soon as Sam gets dilated, his spitting and retching almost instantaneously stop. These are usually the tell tale signs he needs a dilation. Unfortunately, there isn’t anything else that can be done, except put him under anesthesia, and stretch his esophagus.

As of now, surgery will wait to hear from us. IF Sam gets symptoms, they will put him on the schedule as needed. With Sam’s thirty-five plus esophageal dilations, we’ve only been wrong once. There are many, but one great thing about Sam’s care team, is they trust our judgment. They listen, really listen to us. I call the surgery scheduler, who I’m on a first name basis with, and they get him on the surgery schedule ASAP.

We are going to believe Sam won’t need as many dilations as the first time, and even better, he won’t need anymore.

I’ll leave you with a moment from a day in the life of Superman Sam. You just can’t make this stuff up!

We were sitting in “school” with Sam. When Sam does distance learning, we prop his iPad on the kitchen island and he sits on one of the bar stools. I usually stand next to him. His nurse will stand or sit on the stool on the other side of him. All of the sudden, I thought I noticed something about Sam’s mouth. Does he have a missing tooth?!?! With Sam’s camera on, I didn’t want to disrupt school.

As soon as school was over, Sam’s nurse and I pried open his mouth. Yes, we had to do this. It’s the only way to be able to see inside his mouth. Yep, I saw it right the first time, a bottom, front, tooth, MIA! What?!?! Where did it go?!?! Did he swallow it?!?! Was it in his bedroom somewhere?!?! How did I not know he had a loose tooth?!?!

Mom guilt, setting in. And then, that good ole self talk. Stop it!! You have a lot more things to keep track of in the world of Sam, then a loose tooth!!! It’s not a big deal!! He’s clearly okay!!

Mom guilt. Raise your hand if you’re a mom and have had mom guilt recently. Okay, I’m feeling better already. It’s so silly. Why do we do this to ourselves? Because, we’re human.

Give yourself grace mama. To me, giving yourself grace is acknowledging the situation, doing what you can to rectify it, then moving on, and letting it go. It’s knowing, we are not perfect.

From the mama with typical children, to the mama with special needs children, to the mama of a prodigal, and everything in between, give yourself grace, because we all need it, every single day.

Sam Strong!

Faith Over Fear!

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!

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!