The Rental Car

We had a fantastic week at our first destination. We were able to spend a few days with my mom and my sister’s family. The weather was close to perfect. We mostly hung out at the ocean and went on long walks.

The little boy with a hole in his neck loves the sand and the ocean, of course. Sand and water might be a pulmonologists worst nightmare for a trached kid, but look at this guy! How can you not?!

On Day 6, we were headed to a different destination to spend the rest of our trip with Sean’s side of the family. We packed some stuff the night before. We wanted to try and make a somewhat early start the next day. There was about a four hour drive ahead of us.

We had to play quite a bit of Tetris to get all of our luggage and Sam’s medical supplies in the rental minivan. We were all packed and ready to leave by nine-thirty in the morning.

I pressed the start button. Nothing. It’s not like back in the day when you put the key in the ignition and turned it to start your car. I tried again. Nothing, not even a sound. Sean, Will, Abby, and I looked at each other and instantly started laughing. Is this for real!?

Sean and Will got out of the van and popped the hood. Abby and I thought this was pretty funny stuff. Um, what are you guys gonna do?! Neither of you know anything about cars. Gotta give them credit for trying. Hehehe. All four of us had another good laugh about that.

I called the rental car company and after we tried a few tricks they gave us, they decided it was time to send us a tow truck. Bummer. We had to wait for the tow truck to come, which of course, was going to take at least an hour. We decided to get something to eat. The place we wanted to go to was closed. Fitting. We went to the little café in our condo which also had lots of convenient store items right at Sam’s eye level. Oh boy. Not the best place to bring a very busy little boy with special needs. Sorry to everyone else in the café, I’m doing my best.

About an hour and a half later, we walked back to the parking lot where the rental van was. Because we had so much stuff, the rental car company was going to send us two Ubers to bring us to get a new rental vehicle. The more we thought about it, we figured two probably wouldn’t even be enough. We decided I would go to the rental car place myself, get the new vehicle and come back to pick everyone up. This way, we wouldn’t have to unload, load, unload, and load again.

On the way to the rental car place, I got a call from Will telling me the tow truck driver jumped the van and it started. We contemplated keeping the van. The tow truck driver told them, ”It will get you to wherever you need to go, but don’t shut it off.” Hmmmm, probably not a good idea to keep it.

Shorty after, I got to the rental car company. I waited my turn in line and explained our situation. The manager looked at me with a bummed look on his face and said, ”I’m sorry, I already told them on the phone, I don’t have anything big enough here for you. The biggest vehicle I have is that.” He pointed to a very small blue SUV. Ummm, yeah, that’s not going to work. I kindly explained, how unfortunately, it wouldn’t work. Now what?!

The manager told me the airport is the only place that will have a vehicle big enough to accommodate us. Oh no, how far is that?! Thankfully, the airport was only twenty plus minutes away. Thank you Lord!

Soon after, the fam arrived in the van. I could see them laughing when I came out. Apparently, Sean and Will quit playing Tetris. They quickly jammed everything back into the van, which meant Abby and I had to share one seat. Hopefully we can make it to the airport without getting pulled over! Don’t worry, we did. Whew.

We got to the airport and jumped through a few hoops to finally get to the company we rented a vehicle through. A sweet pregnant gal told me to walk through the lot and pick any car I wanted. She said after I picked one, I should grab the keys out of the console and bring them to her. I searched for the biggest vehicle I could find on that lot and quickly grabbed the keys! There was no playing Tetris in this vehicle. We quickly loaded our luggage and Sam’s medical supplies easily into the new vehicle. Five hours later, we were finally on the road to our next beach destination.

We made it there after dark. Our family happily greeted us and helped unload our obnoxious amount of stuff. My sister-in-law and mother-in-law rented a beautiful mansion on the water. No lie, it was literally a mansion, with an elevator and all! It easily accommodated all twenty of us.

We got somewhat settled, did all the Sam stuff, and went to bed.

To be continued…

The Medical Emergency

Okay, the suspense is finally over, partially anyway. I decided to tell each mishap separately. I thought it would be much more fun this way. Like I said, you seriously can’t make this stuff up and it makes for a good story…later anyway!

Don’t worry, the medical emergency was not Sam.

We set off to Florida very early in the morning. TSA Cares is a wonderful program and definitely makes going through security with a complex child a much more smooth process. I would highly recommend taking advantage of this service if you are traveling with a medically complex child.

All was going well. We had just got into the air. All of the sudden, I hear screams coming from the back of the plane. My instant thought, looking at Sam’s nurse, ”You’re a nurse, you should go back there!”

Come to find out an older man had passed out. They were about to lay him on the floor and start chest compressions, but thankfully he came to. Sam’s pulse oximeter came in handy. We took it off Sam for a few minutes and Sam’s nurse was able to use it to check the ”patient’s” oxygen level and heart rate. His numbers showed he would hopefully be okay.

They turned the plane around to go back to Minneapolis. After we landed, the ambulance got the passenger, and who I assume was his wife, off the plane, we sat on the runway for a very long time. During all of this, we were not allowed to “move about the cabin”.

Sam did great on the almost six and a half hour flight we were not planning for. Like when we went to Cincinnati, he needed a little oxygen in the air. This VERY busy little boy surprised us for how well behaved he was. Thank you Lord for IPads!

Once we finally got there, got all of our luggage, and the rental car, we were all pretty hungry at this point, except for Sam, of course. After searching for a bit, we found a great place right on the ocean. We had some time, or so we thought. It was around 3:00 and check-in wasn’t until 4:00. We got our food and I began to get text messages from two different people about checking into our condo.

The message that took me by surprise, and the only message I remember is, ”The office closes at 5:00.” Say what?!?!

I knew we couldn’t check in until 4:00, but I had no idea we only had a one hour window! Uh oh! Everyone, eat fast because we have to go! Sam’s activeness didn’t leave much food in the bellies of Sean and I. Oh well, we gotta go!

We made to it our condo and that’s another story in and of itself. There was A LOT of confusion and a language barrier. We rented two different condo’s with different owners. Thinking this had something to do with the confusion.

After things had mostly been figured out, I asked the about the packages I had delivered and where we could get them. The security officer, responded, “Sorry, the office closes at 5:00, you’ll have to get them tomorrow.” Um….yeah, that’s not going to work. This isn’t extra clothes I sent. My son needs the things in those boxes to live. I politely explained the packages were for my son who is medically complex and needs the supplies in the boxes in order to live. For real. Their eyebrows went up and all of the sudden, we were able to get the packages. Whew.

Once we finally got all of our luggage and Sam’s medical supplies to our condo, we were all pretty tired and hungry, but weren’t going to let that ocean wait another day for us! It might have been dark, but it was still beautiful!

To be continued…

You Can’t Make This Stuff Up!!!

We it made home from Florida, Sam stayed healthy and out of the hospitals there. Overall, we had an amazing time and awesome weather.

We’re off!

It’s seriously insane the events that took place from the beginning of our trip to the end, but I wasn’t sure how to title this post so I figured I’d keep you in suspense for a few days and throw out each title I thought applicable.

To be continued…

Upcoming Procedures

This week Sam will have an endoscopy, sigmoidoscopy, MRI, and ENT will check to see if his trach needs to be upsized (bigger trach tube). I love when we can get lots of docs in on one sedation!

As I mentioned previously, Sam has had some GI (tummy) issues that we are hoping can get figured out, hence the endoscopy and sigmoidoscopy.

The MRI is a precaution for the seizures he’s had to rule out anything serious.

Sam has not been put out in over six months!! It’s the longest he’s ever gone in his life, by far!!! Maybe since it’s been so long his PTSD won’t kick in when he sees the purple surgery p.j.’s. Fingers crossed.

Prayers for no PTST with Sam, all the docs involved, some GI answers, nothing serious on the MRI, the anesthesia team, and a smooth, quick recovery so he can get back to this kind of crazy stuff.

Boxes are the best toys.

Sam Strong and Faith Over Fear!

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!