DECANULATION!!!!!
I think it's actually happening this time. Sam is scheduled to get decanulated (get his trach out permanently) on March 22nd!!!!!! We’ve been told Sam will be decanulated in the Spring many times, but they have never scheduled a date. Someone pinch me. It feels real this time.
Although Sam's had a rough almost month now, we had a really good run and we avoided a hospitalization. This is a big deal for Sam. His doctors wanted him to be able to be successful (stay healthyish) in school for a couple of months before they gave the a-okay to be decanulated. I hate to say this out loud, but before now, Sam had never gone more than four months in his whole little life without a hospitalization. He's seven. Do the math. We are now going on eight months! Okay, now knock on wood everyone.
I know I’ve said it before, but one of the hardest parts of having a special needs child who is also medically complex is he can’t tell us what’s wrong. It becomes a guessing game fairly quickly along with consulting with many different specialties, bloodwork, stool samples, x-rays, urinalysis’, etc. Thank you Lord for home care nursing.
He's on day two of being back in school since before the holiday break. Hoping he can stay healthy and continue to stay in school until the big day.
We are ecstatic and terrified for Sam to get his trach out permanently. It’s sounds a bit crazy, but you get used to having a lifesaving breathing tube after seven years. In our world, it's a safe airway. I watched Sam die four times with one of those times needing more than ten minutes of chest compressions. He is alive because of his safe airway. I think this helps in understanding our fears of having his trach (safe airway) removed permanently.
What does this mean though?! It’s literally life changing for us and Sam. It means…
…Sam can swim.
…we don’t have to get terrified every time Sam takes a bath or is around any kind of water.
…I can drive in a car with him by myself.
…he can go to school if he doesn’t have a nurse.
...he won't have home care nursing, which is exciting, scary, and sad all in one. These strangers become some of your best friends.
...traveling hopefully won't be as much work.
...we don't have to do daily trach cares.
There are so many more reasons, but you get the point.
For us, swimming is at the top of our list and I know it will be at the top of Sam's too. Sam LOVES the water. We joke that every time we give him a bath, he tries to kill himself, quite literally. His new thing is to try to lay down in the tub. When he realizes I'm holding his arm a bit tighter, moving quickly to pull him up and away from water, and clearly anxious, he laughs and does it more. Okay, bath time is over now. I can't imagine giving him a bath and not having one hand on his arm the entire bath time and not feeling nervous the whole time. Swimming lessons will definitely be in his future. Is there swimming in the Special Olympics?!
As always, we hold high hopes and low expectations for March 22nd. He will go under anesthesia for the umpteenth time and his ENT will check for a third time to make sure his Laryngeal Cleft is still intact, meaning the surgery he had in Cincinnati worked and there is no hole in his airway. If that's the case, which it will be, his ENT assured me I would get to do the honors of taking out his trach. I have done this a thousand times, but have always quickly put a new one in. This time, I won't.
We will stay one night in the Pediatric Intensive Care Unit and go home the next day if all goes well, which it will.
It’s been a bit since my last update. No news is good news, right? Here are a few things we’ve done since August.
Best thing we ever did.
MN State Fair
Trying to get Sam to look when we're taking a picture is a very tall order. ; )
Love getting to watch Abby play. Thanks for the pics Beth.
Got to take these two girls to the Lumineers concert. Abby's birthday present from April.
Where does the time go? Abby (Sophomore), Will (Junior)
Love getting to watch Will play.
Touchdown!
Thanks again for the pics Beth.
God made this dog just for our family.
Fall fun.
I think Will & Abby are having fun too.
Here's what happens when there is no nurse and mom wants a few more minutes of sleep. Clothes are off and his trach is out. At least his feeding tube is still in.
Apple orchard fun!
We got him to look at the camera!
Halloween
Roar!
We almost got him to look!
BF's
Taking some tastes. Nice job Sam!
Crayola Experience
I think Hank is hugging Sam.
Annual cooking making day was a success.
He wouldn't look at Santa, but as you can see he has a huge smile on his face.
Happy 17th birthday Will!
As always Sam Strong and Faith Over Fear!
High Hopes, Low Expectations
When it comes to certain things in life, I think it’s okay to have high hopes and low expectations. In my opinion, high hopes with high expectations, only leads to disappointment.
I generally try live by this motto, but recently I did not.
Sam was supposed to start school today. He hasn’t been in school since October. I think I was looking forward to him starting school the most. When he came down with what we think is a stomach bug yesterday, I was selfishly pretty bummed. When I shared my feelings with Sam’s dietitian, her response was,
Not selfish in my mind. You want this for Sam and it was also going to be a break for you.
She was right. Clearly in this situation, my hopes and expectations were high. Give yourself grace.
We’re still home and hoping to keep it that way. Although, we are very done with this PICC line, it might just be the thing that keeps Sam from a hospital stay.
Before he started feeling sick, he was on track to be done with the TPN (food/nutrition through his bloodstream) by the end of April, which would mean no more PICC line. His g-tube feedings have been going really well. We are hoping this doesn't set him too far back and also know he likes to throw curveballs in the mix sometimes.
The prayer is that this is a stomach bug and not an intolerance to his feedings. As a of now, we are confident he has a stomach bug and hopefully he’ll kick it quickly.
On another note, we were able to take a trip few weeks ago. If you remember from our last trip, we had some memories to last a lifetime. On our way home, our flight was canceled. We weren’t able to get on another flight home until the next day. From that, we were each given vouchers from the airline. Abby had a soccer tournament in Florida so we thought we would use those vouchers and try our luck at another trip.
I say trip because when you are traveling with young kids or someone with special needs, it's a trip, not a vacation. ; ) Although it was another eventful trip, we had a fabulous time.
Here’s a very short version.
On the way there, our flight was delayed two hours, Sam peed through his sweatpants. We had to leave his wet shirt on because he was still hooked up to his PICC line. He pooped right before we boarded the plane, which held the plane up a little longer. Thankfully, we hadn’t boarded yet. He threw his suction machine (basically his lifeline) into the ocean. Red tide hit our beaches, but we had two fabulous days on the beach. Abby sprained her ankle in her second game. Our flight home was delayed an hour and then we sat on the runway for almost another hour. When we got home, we were locked out of our house.
BUT what we remember was absolutely perfect weather and a wonderful time with family and friends. We kept our hopes high and our expectations low. We had some bumps along the way, but we expected some of those and rolled with the punches.
Sam might not be the easiest guy to travel with, let alone leave the house with, but we want him to have the best quality of life and we have chosen to do what we can to give him that and not hold our other kids back despite his complexities.
Ready to fly!
Trached kid playing is the sand. Sand in the airway, not good. Shhh...
Prayers Sam can kick this stomach bug quickly and go back to school where he makes people better!
Oh, and Happiest World Down Syndrome Day!
Sam Strong
Faith Over Fear
Thankful
I know where we are! This is the street that leads to my house!
We are home. Sam is doing great. I hooked up his TPN (nutrition) by myself for the first time, with the guidance of a nurse specialized with pediatric home infusion. Sean was super overwhelmed with the whole process, as I was after my first teaching.
When everyone kept telling me at the hospital, if I could do a trach, I could do a PICC line, I thought, very try true, at first. The more I processed it all, it wasn’t about the ‘if’, it was about the ‘and’. I realized I was overwhelmed with the ‘and’…a trach AND a PICC line. They were right though, I can do it. With time, it will get easier.
Depending on the day or even moment, we are likely thankful for different things. A friend once told me, her mom taught her to say three things she is thankful for everyday. Yesterday I was thankful for the playful bickering between my family, PICC lines, and my home. I could go on and on about many more things I am thankful for, but I think that summed up the things at that time.
I am overwhelmed with gratitude this Thanksgiving. I hope no matter was you are going through, you can find something to be thankful for.
Today I am thankful for home care night nursing, my faith, and a good cup of coffee in a glass mug. What are your three things today or right now?
From my family to yours, I hope you have a happy, healthy, and thankful Thanksgiving.
Faith Over Fear
Sam Strong
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.
We Fight For All Of Our Children
We're back to that resilience thing I wrote about quite some time ago. Click here to read how I feel about resilience. I know it could be SO much worse, and once in a while when things are harder, my thoughts go to, "but God", don’t we have enough on our plate? Why does it seem when life throws you a curve ball, more keep coming?
If you have more than one child, my guess is you love each of them equally, and you likely express your love differently based on their needs. Each of our kids are special and unique. No one else in the world can offer what he or she can. I believe this with all of my heart. We do our very best to give each of our children what we think they need from us emotionally, socially, physically, mentally, academically, etc. You get the point. We do our best to raise virtuous adults.
Sometimes circumstances and/or nature gets in the way.
We do very best, and that is all we have. At times, our very best, doesn’t seem or feel like enough, and during a trauma there is only so much we can do, even if we want to give more, circumstances can stop us. We carry the weight of our children’s bad choices on our shoulders whether they are six or twenty-one.
Sometimes, no matter what we do or say, I believe nature will take over nurture and our children can take a destructive path. It comes to a point where we have to set boundaries, and they have to figure it out on their own.
For parents and loved ones, watching the destruction, makes for heartbreak, anger, pain, frustration, sadness, despair, etc. It’s a road no parent foresees for their child. We can try all the things the experts say to do, but those things don’t always work. It’s a road you think can’t happen to you, because you are good parents.
We fight for all of our children. We love each of them equally and want them to have happy, successful lives. They grow up and make decisions of their own. How we set our boundaries doesn’t mean we love them any less. We can set boundaries and love our kids at the same time. Boundaries are an important part to healthy mental health and love for our children.
I have to admit, most of us in this family have handled adversity like rock stars. Daily, I hope, pray, and believe, someday I can tell this part of our story. It WILL BE a story that ends with restoration, meaning better than it was before.
We fight for all of our children and sometimes that means letting go of what we cannot fix or change. At the end of the day, there is very little we have control over and we have to rely on hope. Hope that the old will be made new. Hope that faith will prevail over our fears. Hope that restoration will come.
The Icing on the Cake
Getting all of Sam’s medical equipment and supplies situated on an airplane takes quite a bit of patience. One of the bummers when flying with someone who has oxygen, is they have to sit at a window seat. This makes things a bit more difficult for us, but thankfully Sam has done really well flying.
We got all of our stuff situated and sighed a big sigh of relief. Right away, I smelled a familiar smell. No, not now Sam. Remember when I told you our only option for diapers was a size too small? Yeah. When I turned to look, “it” was already coming out the back of his diaper. Oh great. What do you do with a five year old who’s pooped on an airplane?!
We were still on the ground so I unbuckled Sam and carefully picked him up. Sean followed me to the front of the plane with the diaper bag.
I explained the situation to the fight attendants. “Can we just lay him down right here?”, I asked. It was the only place I didn’t see carpet and knew this was going to be a messy situation. They politely obliged.
A messy situation might have been an understatement. As we started to change him, there was poop EVERYWHERE. We ran out of wipes. Of course we did. At this point, there was one flight attendant holding open a garbage bag, another one wetting and handing me paper towels from the bathroom, and another giving us moral support. Sean was helping wipe the poop off Sam and that, was everywhere. Bless all their hearts.
After we wiped the poop off the floor and were about to pull Sam up to put new pants on him, Sean stopped me. “Jamie, look at your arm.” For real?!?! There was literally poop from my wrist to my shoulder, on ALL sides of my arm! You cannot make this stuff up!!! You know your husband loves you when he’s holding your hand and wiping poop off your entire arm.
We remedied the situation as much as we could, obnoxiously thanked the flight attendants, and trudged back to our seats. I’m pretty sure we held the plane up a bit longer. Okay Lord, I’m done with the mishaps. Get us home safely and smoothly.
We hooked Sam up to his oxygen once we got into the air and he fell asleep shortly after. My sweet little boy was clearly exhausted. He slept for almost the entire flight. Thank you Lord. I needed that.
All tuckered out.
We were all very happy to be home, even if it was below freezing.
Like I said, we made lemonade, out of quite a few lemons on this trip. Would I do it again to not miss out on the good parts I had with my family? Absolutely.
THE END.
Going Home
We had one more full day with our family.
Cousin love.
Our flight was not scheduled to leave until 8:00 p.m. the next day. Since we had to check out of our rental by 10:00 a.m., we spent the day at the Tampa Zoo. We had a great day at the zoo and celebrated Will’s fifteenth birthday. How is he fifteen already?!
I was too cheap to buy the photos, but they did get a few good ones!
Happy 15th Birthday Will!
We returned our rental vehicle at the airport early in the evening. Not only did the rental company not charge us for the upgrade, they took a good chunk of money off of our total bill for the inconveniences. We took the tram to check our luggage.
As we were waiting in line, a staff member from the airlines called everyone who was flying to Minnesota up to the check in desk. She informed us, "I'm so sorry everyone, but this flight has been cancelled." Are you serious?!?!All fifteen of our family members made it home today! Not that I didn't want them to make it home. Why us?!?! I'd be lying if I said these thoughts didn't come into my mind.Now, pull yourselftogether, Jamie, and never mind the "why's".Do I have enough medical supplies for Sam?! You can’t buy suction catheters at Target!
After four hours of waiting in the airport, the airline booked everyone on the flight a room at a nearby hotel. We waited at least another hour for the shuttle to come get us. Thankfully, I had already drawn up Sam's nighttime meds that morning. His nighttime nebs would have to wait. To say we were all getting cranky at this point would also be another lie.
The airline was very accommodating to Sam and his medical needs. We were the first to get on the shuttle to the hotel. We were getting some major dirty looks, which made me feel sad and a little annoyed. Most people take one look at Sam, us, and all that comes with us and give us looks of sympathy. If they only knew.
It was pretty late (for us) when we finally made it into the hotel room. We were very grateful, the airline booked us two adjoining rooms. As we came into the first room, we discovered if we didn't get two rooms, we would have had a very difficult time getting all of our luggage and Sam's medical supplies in one room! After we got Sam's nighttime nebs (thankfully I had packed a few extra neb cups) done, we sandwiched him in between Sean and I, and tried to go to sleep. He still sleeps in a crib so he thought this sleeping arrangement was very funny. After about forty-five minutes of me grabbing his ankle to slide him back onto the bed, he finally fell asleep.
The next morning, we got ready and packed up our obnoxious amount of stuff for the airport again. We realized we wouldn’t have enough diapers to last us through the day. Sean tried the gas station across the street from the hotel. No such luck, and the attendant told him unless you have a car, there’s nowhere close to get diapers. Great. The hotel had them, but they were going to cost us a pretty penny. Fourteen dollars for four diapers! For real?! It’s important to note for the last mishap, the diapers were a size too small.
The shuttle took us back to the airport and we checked our bags. The airline gave us meal vouchers so we ate very well for lunch.
We headed for security. We were without a TSA agent to help us this time. Going through security with Sam’s oxygen, emergency bag, suction machine, med bag, diaper bag, feeding bag, and our things is quite the ordeal. They have to check every med and test every liquid, which includes his sterile water for suctioning and all of his formula. If people stare, I wouldn’t know because my focus is on Sam and getting us through as quick as possible.
We were almost through security when a woman walked up to us. She said, ”You guys are amazing. You must do this often.” I laughed and told her, ”No, it’s only our second time traveling with him, but thank you so much for the encouragement.” She responded, ”Well you make it look flawless.” With much sincerity, I thanked her, she smiled with all her heart and walked away. It felt like an angel was sent from God in that moment. After the last twenty-four hours, she had no idea what that did for my soul. I call these little moments in life, God winks.
Sam and I had wandered off. Sam is a very busy little boy. Although he’s five, I would say he functions more at the level of an eighteen month old. That being said, we tried to let him be as busy as possible before the plane ride. We wandered back towards our boarding gate.
Sean and Will were walking towards us on a mission with somber looks on their faces. Oh no, what now?! "The flight is cancelled.", they informed me. You have got to be kidding me!?!? No!!!!! They instantly started laughing. Hahaha, real funny you two. I think I might have cried at this point. Actually, with the lump in my throat that built up instantly, I know I would have cried. Although the flight was not cancelled, they did tell me it would be delayed another hour. Now that doesn't seem so bad.
We were all extremely happy to board the plane and get situated in our seats about an hour later.
To be continued...
The Wedding
The next day was my niece’s wedding. This mishap is not ours, but I couldn’t leave it out of the story.
The wedding was suppose to start at 5:00. My sister-in-law had ordered flowers that were suppose to be delivered at 2:00. At 3:00, the flowers had still not arrived. After failed attempts of trying to get a hold of someone at the flower shop, it was time to figure something else out.
By looking at the beautiful flowers, that matched perfectly, you would never know this mishap even happened. The original flowers showed up during the wedding ceremony. They made for some more pretty décor and thankfully my sister-in-law did not have to pay for them.
The weather was perfect, as was the wedding.
Wedding Party
The Grant Family
To be continued...
Our Car At Home
The next morning Sean had a voicemail left from the middle of the night. Hmmmm, that’s weird.
As he listened to the voicemail, his facial expressions told me something was not right. Oh boy, now what?!
The call was from the sheriffs department at home. The officer explained Sean’s car was in the impound. Say what?! Overnight, the police found it crashed and deserted in a snow bank on the side of the road. They had to impound our car because it was blocking traffic. Is this really happening?!
Yep, it was really happening. We were in Florida, what could we do?! We did what we could by calling the police and our insurance company explaining we were in Florida. We tried not to think about it after that. We’ll deal with it when we get home. And, we still are. Thank you Lord for insurance!
We weren’t going to let that stop us from enjoying this beautiful day.
The beach here was much less stressful for Sean and I with Sam. The waves were smaller and it had a much longer, shallow shoreline.
Playing Uno
"Helping"
It’s hard to see, but Will’s on a paddle board and Abby is watching.
No lie, it was a mansion.
To be continued…
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…
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.
"Don't worry mom, I'm ready for this."
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.
"I really don't like all the yelling when a touchdown is scored!"
He, of course, loved the apple orchard.
Sam loved the train ride. I think the girls did too.
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!
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!
Donate to RMH Today!
If you’re able, don’t forget to make a last minute donation to Ronald McDonald House Charities today!
Last year our team won the Largest Team Award. Way to go Team Sam Strong! Maybe this year, we can win the award for Most Last Minute Donations! It’s not actually a thing, but it sounds good. 😁
Click here to donate in honor of Team Sam Strong!
Click here to read my latest post on what RMH means to me.
Have a happy and safe Halloween!
The Abbreviated Version
It isn’t until I see Sam’s story on paper or I’m asked to share it at a volunteer event, I think, Holy Smokes!!I shared my “What Will You Remember” post with one of Sam’s nurses he had while “living” in the hospital.
Her: Oh my gosh!!!! We were out on a boat today and I literally was thinking about Sam! I honestly CAN NOT believe it was 4 years ago!
Her: He changed my life!
Her: That post made me bawl 😭😭😭 so perfectly said! You have all been through SO much.
Me: I don’t even realize it until I write about it!
Her: And that is truly the abbreviated version. Insane.
That hit me hard. The abbreviated version. Wow. So true. Crazy.
Here’s the thing.
I don’t want discount Sam’s story and I know it’s significant. I know it’s a big one.
I also know so many have been through so much more and it could be so much worse.
Side note, never tell anyone else when they’re going through a rough patch, it could be worse. That’s a whole other topic.
It’s completely different when it’s coming from the person experiencing the tough time. I believe when your having a “poor me” moment, because we all have them at times, acknowledging others are going through or have been through worse, is not a bad thing.
Sometimes it’s not even a “poor me” moment. It’s truly a crisis situation.
Either way, it’s important we don’t stay at the pity party for too long. Pity turns into wallow and self loathing. Then we’re in trouble. When we’re here, it’s a lot harder to be there for the other people in our lives because we’re focused solely on our self.
Having a moment is okay, but staying there isn’t good for anyone.
For me, acknowledging “it could be worse“ helps me see the bigger picture and focus on the things I am grateful for. It quickly gets me out of the party no one wants to be at for very long.
It’s that self talk that says...
Homeschool, What?!
MANY of us are parents or caregivers who have turned into teachers overnight. Who would have thunk?!
Change is not easy, but with a little elbow grease and most importantly an overall good attitude, you can do it.
Yes, at the beginning, we have to work out the kinks and navigate through the unknowns, but the more we focus on what we are going to do with the change and not dwell on what has changed, the more successful and happy we will be.
Like I’ve said before, technology can be a blessing and a cursing. Right now, in the world of education and beyond, it has been an absolute blessing, no doubt.
I don’t know about where you live, but the teachers and educational staff in our community have really pulled together and made the best of a tough situation. And we are the largest school district in our state.
Many teachers are working hard if not harder then they did before to do their best to keep up with our children’s education. Let this time remind you of how hard teachers work to educate our children. This situation in not ideal and they would rather be in the classroom with our kids.
Hopefully you have settled into somewhat of a routine. Is it going to be the same as if kids were in school? No.
I don’t know about you, but I’ve caught myself having yelling matches with my kids and their schoolwork. It’s funny, because I was a teacher, so you would think I have more in my tool belt when guiding them with their schoolwork, but all that education and patience seems to go out the door when it comes to your own kids. Hahaha!
I’m so grateful I don’t have to plan the curriculum!
This is tough, but let me tell you, there are much tougher things.
We can fight the change or we can embrace it. Knowing what it’s like to live in a new normal, if you can embrace the change, you will stay mentally strong.
While we are quarantined at home, and things are out of the norm, someone else is grieving the loss of their daughter/son to Suicide, or just found out they had cancer, or have been waiting in the hospital for over a year with their child for a bone marrow transplant, or the list goes on and on and on and on. It can always be worse.
Let’s not forget there are many out there who have been through or are currently going through far harder things than suddenly becoming their child’s teacher.
Teachers are working very hard to keep things as normal as possible for our kids. Many have kids of their own at home, while also working full-time.
I’m not saying we can’t have a bad day, here and there, but let’s refuse to let COVID-19 steal our joy and be thankful for what do have!
Let’s be grateful for our educators who are working hard to make the best of the cards they’ve been dealt.
Hang in there.
This too shall pass.
Best Christmas E...v...er!
Well, I'm overwhelmed again and it's not because things aren't going well. Again, it's the opposite.
We were shocked and surprised when our friends showed up at our door the week before Christmas with gifts...so...many...gifts. I tried to ask what was going on and everyone just ignored me. Then, strangers started to follow with even more wrapped presents! The presents kept coming and everyone kept ignoring me! After the gifts were literally overflowing in our living room one of the strangers with the sweetest, kindest smile began to talk. I don't remember much of what she said. I remember hearing, We are here with the Vikings and the Best Christmas Ever and your friends nominated you...
I don't know if I was sobbing before or after that, I just know the tears were flowing off and on A LOT that night.
The sweet gal from the Vikings had our friend read what she wrote to nominate our family for the Best Christmas Ever. You know when the tears are falling so fast down your cheeks, you can barely catch the next one? Yeah, that was me during that little reading. I just kept thinking, we do not deserve all of this. Yeah, I still feel that way, especially after all we've been blessed with in the last few months.
We were given SO MUCH stuff, from a trip for our family to anywhere warm to Sesame Street pjs for Sam. Things we could easily do without, but those things put some pretty big, heart felt smiles on my kids faces. Okay, okay ours too. I got a KitchenAid mixer, something I've always wanted, but either couldn't or just didn't feel right about buying in the past.
We have been beyond blessed by our family, friends, and strangers the past three years, but this year has been over the top.
Honestly, I'm still in shock and it all feels so undeserving. I get a lump in my throat each time I think about the whole thing. Why us?
I guess I tell myself it wasn't for me, or Sean, or Sam. The Best Christmas Ever was for Ryan, Will, and Abby. You see, when you have a complex child, everything revolves around that child. If you haven't seen the movie Wonder, I would highly recommend it. The way it depicts each member of the family with a complex child is spot on. The sister of the boy who is medically complex in the movie says, "August is the Sun. Me and Mom and Dad are the planets orbiting the Sun." Although she deeply loves her brother, she feels left out sometimes. I could write a book about the mom guilt feelings I have with my other three kids since Sam has been born.
It really is incredible what can happen when people use their pain to help others. Click here to learn more about the Best Christmas Ever and read the story about this amazing dad who decided to pay it forward year after year to families who have been dealt a tough hand at no fault of their own. We were blessed this Christmas because one person tried. And we weren't the only ones blessed, all that partook were uplifted. We can't thank all involved enough. Sometimes, thank you doesn't do justice. At the end of the day, it's my hope, my kids will see His work in all of this.
