Miracles Still Happen
We went into Sam’s procedure with high hopes and low expectations. After what happened in Cincinnati, the odds of the surgery working were not in Sam’s favor. Here’s my analogy. Let’s say you get five sutures (stitches) in your airway. Within minutes of waking up after surgery, you start throwing up every fifteen minutes. The pressure from throwing up is most likely going break open all of the fresh sutures that were just placed. It makes sense that everyone had very low expectations, that few, if any sutures would stick.
When Sam’s ENT came to talk to us before the procedure, he told us he spoke with the ENT who did the surgery in Cincinnati and heard what happened. I told him, my hope and dream is that at least two sutures stuck. High hopes, low expectations. He responded, ”We’ll see.”
Feeling a little loopy from the Versed, and although more calm, still not excited for what's about to happen.
We’re getting close to seventy times I’ve had to watch my little boy get put under sedation. At this point, we have a pretty solid routine. We see all the staff who need to meet with Sam and I before surgery, they get vitals, we go over ALL his meds and records with the nurse for the umpteenth time, I make sure the right labs will be drawn so Sam doesn't have to get poked more, sign all the paperwork, make sure Sam gets Versed, keep snuggling my poor, very stressed out little boy, and then give him one last kiss before they roll him back to the OR. I take a deep breath, say a short prayer, and the nurse (or Sean, depending on who's with me) and I walk to the cafeteria to get something to eat.
We go back to the waiting room, eat, and depending the the procedure, wait. This time, I look at Sam's nurse and start praying. Let's note, I am not always good about praying before meals. "Lord, bless our food and I pray two of the sutures will stick. It would be really great if three of them stick. And if your having a really good day, please make all five of them stick." Sam's nurse responded, "Amen." We started eating our food.
I think I forgot Sam's previous procedures usually have two to three doctors doing something or a surgery that takes longer, because I had only two bites and Sam's doctor came into the room. He said, "Well...two of the sutures stuck. And actually, three of the sutures stuck. And actually, all five sutures are still in tact." Instant tears from me and Sam's nurse. I had the same feeling in my heart, mind, and soul on the day the doctors told me they were able to attach Sam's esophagus. Pure shock. An absolute true miracle. Thank you Jesus. Sam's ENT had already called the ENT in Cincinnati to let him know, and his response was, "Wow." Enough said.
He has no idea the greatest news we just got!!!!!
Sam always has to throw a curve ball somehow. We were cleared to leave at about 12:30pm. This would have been record timing for a procedure with Sam. We started packing things up and the nurse came into the room. "Sorry, I can't let you leave, his potassium is 8.3." What does that mean?! Apparently, that is heart attack level. If I'm being honest, I had zero worry. Sam. They checked it again right away. It did go down to 7.4, but that is still very high. Lab came to draw blood from his other arm. Even after being put under, it still took three of us to hold him still. Poor buddy. The nurse laughed at me when I put the call light on to show her the new results on my phone. "4.1", I told her, "We can leave, right!?" "Yes, let's get you guys out of here!", she said.
We have been waiting for this since Sam was two months old. He had the surgery done twice here and it failed, likely because of his retching.
We really needed a big win. Thank you Lord.
Now what?
This is the first MAJOR step in being able to remove Sam's trach (breathing tube). LIFE CHANGING. Sam still has A LOT to overcome, but this surgery is a HUGE win. He will have a swallow study and see his GI (gastroenterology), ENT, and pulmonology. And then hopefully, he can start feeding therapy!!!!!!
Thank you for your continued prayers. I truly believe they have brought Sam to where he is today.
SAM STRONG
FAITH OVER FEAR
Psalm 27:14 says, "Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord!" I find so much peace in this. When I wait on Him, it's not a waste of time. It might be incredibly hard, but it's not a waste of time. The more I wait on Him and not me or others, the more He seems strengthen my heart.
Thank You!
A BIG thank you to those who donated to the Ronald McDonald House Charities-Upper Midwest! Our team, Sam Strong, raised $1,805!!
Click on the logo below to read more about this awesome charity.
I promise updates are coming soon on Mr. Superman Sam. Summer is flying by! For the most part, no news is good news!
Only 3 Days Left!
Click here to donate to Ronald McDonald House Charities - Upper Midwest! It’s easy to give online by clicking the red, “Donate Now” button. Every little bit helps!
I cannot say enough about this charity and the gift it has been to our family for the past five years.
Thank you in advance and stay Sam Strong!
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!
Dilation
Home sweet home.
We out!
I can’t wait to be home!
Sam was happy, but also nervous at times, when we left the hospital. He walked out with excitement, but would stop here and there, and clench my leg with with fear. I can’t imagine what was going through his head. That’s the thing about having a nonverbal child. I can read his emotions, but I also know there is so much more attached to those emotions and so much going on in that little brain of his. I would love to hear it all. Someday.
Overall, Sam has been doing well. His nights have been rough, but his days have been mostly good. Home care nurses, priceless. Both him and I are definitely happy to be home.
You couldn’t put a price tag on when Sam saw his Abby for the first time, in over six weeks. Let me remind you, Abby wanted nothing to do with having a little sister or brother five years ago. The bond they have now, is priceless.
My Abby!!
I love my Abby!
Home Sweet Home
Ahhh, home sweet home. My Elmo desk, and my spoons and forks.
Most of the time he’s happy with his spoons or forks at his favorite spot in the house, his Elmo desk. Or dancing in the living room to his toddler music.
Playing with my Abby.
Watch in’ football with my people.
Sam will have another esophageal dilation tomorrow. Unfortunately, for Sam, this is a routine procedure. We know the drill. I’m not saying the drill is easy, but we definitely have it down to a science. If you’ve ever had a child have surgery and remember the process, it’s quite the ordeal. When you’re asked to be on a committee to make the patient/family experience better, pre and post op (before and after surgery), you must be a be veteran. Yep, true story.
Pray everything goes well tomorrow. Pray for Sam’s surgeon, nursing staff, and anesthesiologist.
As always, Sam Strong and Faith Over Fear!
Happy Thanksgiving! Remember, you can always find something to be thankful for. Focus on what’s good in your life. I promise, there’s something.
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!
Following the Rules?
I’ll let you decide...
We are definitely on the home stretch!
Faith Over Fear!
Sam Strong!
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!
Ronald McDonald House Charities (RMH)
A home-away-from-home that supports keeping families together and reduces stress during a child’s serious illness.
Sam’s PICC line took an hour to an hour and half to put in. They highly suggest parents are not in the room for this. Good suggestion. I don’t leave his room much. It’s a lot harder to leave now that he’s older. I know I didn't leave a lot when we were "living" here, but I felt more comfortable leaving back then. Thankfully, this place is not home to him anymore. Now he gets so afraid, as he should. Most of these people, although great, are strangers to him.
I decided to stroll down to the third floor, where RMH is. I walk through “the house” and start recollecting. I notice some of the changes. I see it's a beautiful Minnesota fall day so I step out onto the patio. I’m sure my body is screaming for vitamin D at this point.
As I sit on this small patio (picture above is the view from the Minneapolis RMH Campus), the memories of this place come flooding back to me. The sounds of the city going on with its day. Once in a while, a helicopter blares above or the sirens of an ambulance race by. I close my eyes and let the warm sun beat on my face. It feels good. The memories of the beginning of Sam’s life imbedded in my heart, good and bad, begin vividly racing in my mind.
There are so many memories, and some create an extra pang in my heart. I am beyond grateful for this charity. It’s one of those things, you don’t really understand the impact of what they do, until you or someone close to you gets thrown into a situation they never thought possible.
During our extended stay, RMH was a game changer for me. For over seven months, I had a free home cooked meal, a bed when I asked for one, a friendly smile to greet me each time I walked in, a place to get away for a moment without the feeling of being in a hospital, and a nice, warm shower, when it was often well overdue.
As I rarely left the hospital, having this, home away from home, only a few steps away from Sam, made an incredibly difficult time easier, both financially and emotionally.
Some of my most emotional moments were spent at RMH, like sitting, in the warm sun, on the balcony of RMH. Or when I saw my mom, dad, and sister for the first time after they had jumped in their car from Florida on a Thursday afternoon, and made it to Minnesota by a Saturday evening. Grandpa Larry cannot deny the speeding involved.
Here a few more moments from RMH, that will forever be in my heart.
Just like any typical kid during a Minnesota summer, my friend’s two sons wanted to have a lemonade stand. At this point, Sam had been in the hospital for about a month. Unbeknownst to her, the two boys had other plans. Their intentions didn't entail earning money for themselves. The stories they heard from their mom about how RMH had made a major impact on our family, struck a cord in their little hearts. The fine print on the sign they made reads, "all Money goes to ronald mcDonald house!". They raised $55!! Precious.
One morning I was sitting in RMH beginning a new journal entry for Sam’s CaringBridge. I ventured to the microwave to warm-up my coffee. I was already a bit emotional. As I was waiting at the microwave, I read the back of an RMH volunteer’s shirt.
“This is the house that opens its arms, that feels like home, that embraces the children, that comforts the parents. This is the house where families meet, to eat and sleep, to find their strengths and dry their tears, to look forward with hope to better years."
Ronald McDonald House Charities
I proceeded to tell the RMH volunteer how true the back of her shirt was. I couldn't stop the tears from flowing. She didn’t say anything, just gave me a hug. I tried to assure her, my tears, were happy ones, because I was going to take my son home soon.
I never understood the significance of RMH until life threw a curveball at our family. We will be forever grateful for the impact RMH was and is to us today. Since the beginning of Sam’s life, RMH has been a saving grace for me.
Giving to this charity can be as easy as saving your pop tabs. Beer tabs work too. ; ) Each year, the collection we turn in to RMH gets bigger and bigger. People collect them and give them to me. Once a year, I bring the stash to RMH. They make almost $20,000 a year in donations from collecting pop tabs! It’s such a simple thing to do. If you want to start collecting, I would be happy to take the stash off your hands!
Ever since Sam has started his journey here, we have participated in the RMH Family Walk. This year the walk is virtual TOMORROW October 31st! Covid, ugh. Although, we can’t walk, I was able to set up a team last minute and would love your support! I planned to set this up a while ago, but I have been a little preoccupied. 🤣 Please consider donating to this charity that helps families during unimaginable times.
Click here to donate to our team, Sam Strong!
Thank you in advance for your donations!
Sam Strong!
Faith Over Fear!
The Power of Prayer
Not too much has changed and Sam’s still miserable, but his heart rate and blood pressure have come down a little! Thank you for your prayers!
We are at a standstill until surgery comes up with a plan. Patiently, we wait.
Until then, we’ll take all the prayers!
Second by Second
Sam’s day has been quite rough. Man, what a roller coaster. Just when we all think he’s turning the corner, things take a sharp turn in the wrong direction.
Some symptoms are new and others have been off and on since he’s been here. This is nothing. It’s just a fluke.He will get through this.
Please pray for my little fighter. Pray his blood pressure can be controlled. Pray for no more red blood coming from his trach (breathing tube). Pray for less secretions. Pray his lungs are clear on the x-ray results. Pray for no more throwing up. Pray for his heart rate to come down. Pray for his medical team. Pray for his momma, daddy, sister, and brothers too. Pray they can get things figured out and we can go home. Pray for no more sharp turns.
CT Scan
The Intensivist said, “His (Sam’s) CT scan was reassuring and disappointing, at the same time. Reassuring, because the CT scan didn’t show any emergencies. We were checking to see if his bowels had twisted. Disappointing, because it didn’t tell us what is going on.”
Long story, short, Sam started throwing up earlier and didn’t stop. It became more violent and frequent as time went on.
They have him sedated again and he will stay off his feeds for tonight. Surgery will put their heads together in the morning and discuss the next best steps.
This was Sam earlier today when things were going well. He’s wasn’t quite able to walk yet, but with his determination, it won’t take long.
Trying to walk again.
This will just be a little bump. Please Lord, let this be a tiny bump.
Thank you for your continued encouragement, prayers, and support. It would make this journey a lot harder without it.
Ready, Set, Go!
The one thing I’ve learned about having a medically complex child is it’s like running a marathon that doesn’t seem to end. I’ve never run a marathon before, but the people I know who have say it’s the hardest most rewarding experience.
I envy the ones who have persevered through 26.22 miles of running. What an incredible accomplishment.
Our Cincinnati dates are set! Sam’s next surgery is August 19th. He will have surgery to try fix why he has the trach (breathing tube). In layman’s terms, they will attempt to sew together the hole in his airway. He’s had this surgery done two times here, but it failed.
We are seeing the best of the best. Our doctors here care enough about Sam to know they are not the ones for the job anymore.
We will go back September 30th for some GI procedures and to check to see if the surgery worked.
I wish I could tell you they would remove his trach (breathing tube) if the surgery works, but he has several more things to be done in order for that to happen.
One thing at a time.
One foot in front of the other.
You know what else I’ve heard from those crazy marathon runners? It’s the call of their name they hear from a distance cheering them on that helps keeps them going.
When it comes to Sam, there are many on the sidelines cheering. Thank you for staying on the sidelines and continuing to cheer us on. You have no idea the impact it’s made.
Sam Strong!
Faith Over Fear!
Quick Sam Update
We decided to reschedule Cincinnati. After realizing Abby had soccer tryouts while we would be gone, we thought we didn’t want to not be here for her. We also would have had less than a week and a half to plan. That would be a tall building to leap with Sam!
Now we are waiting to get another phone call to reschedule. We thought we’d here back from them this week, but we didn’t. Hopefully we’ll get a call next week knowing they want to reschedule for August.
When it comes to Sam, we’re always waiting for the next thing. When you are in a constant Waiting Place under circumstances at no fault of your own, it’s much healthier to live in the moment than to dwell on the waiting.
We choose not to stay in the Waiting Place.
Will (13), Abby (12), Sam (4)
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...
Cincinnati Called Today
I was thrown very off guard this morning when Cincinnati called to schedule Sam’s next surgery.“
Does July 23rd work for you?” she asked. I was thrown even more off guard! Does she know we live in MN? Does she know my son is trached?
“Yes I think it will work. We will make it work.” I responded.
Right now we’re processing. There’s a lot to think about and do in a very short amount of time. It’s exciting and nerve racking all in one.
We’ll figure it out.
We’ll get it done.
Sam Strong!
Faith Over Fear!
What Will You Remember?
To my sweet Sam. Each year when your birthday rolls around, off and on, I become numb. The moments where my world completely stopped, become vivid in my mind more often at this time of the year.
This day four years ago our lives forever changed. The days with you can be hard, scary, long, overwhelming, and a lot of work, BUT I wouldn’t change a single thing.
You’ve made me realize even more, you never know what the stranger standing next to you has endured during this life, whether there is a smile on their face or not.
Because of you I’ve been able to meet some of the most amazing people and even though there seems to be so much chaos in the world, you continue to make me see all the good in people.
Today, and every year on this day to come, I will forever wonder what you will remember.
What will you remember?
Will you remember the day you were born when they immediately took you from me because you were turning blue?
I don’t think so.
Will you remember when you and Dad left in the ambulance without me?
No, but I will.
Will you remember I didn’t see you and Dad until over twenty-four hours later?
No, but I will.
Will you remember at the beginning when they said you would have surgery and then go home in a few weeks?
No, but I will.
Will you remember when you were four days old? Dad and I were waving goodbye to you, tears in our eyes, as they rolled you away for your first of many surgeries?
No, but I will.
Will you remember when you were scheduled for surgery, but it got canceled because you went into cardiac arrest?
I don’t know.
Will you remember when I was going home for the first time after you had been in the hospital for almost three months to take your brothers and sister to their first day of school, but couldn’t because you went into cardiac arrest again?
I wonder.
Will you remember when less than twenty-four hours later, you turned blue AGAIN, needing more than ten minutes of chest compressions this time?
Maybe.
Will you remember when the doctor would give us more bad news? He told us in order for you to have a chance at life you would need a tracheostomy? They would need to cut a hole in your throat to insert a breathing tube?!?!
No, but I will.
Will you remember the first time Dad and I had to change your trach (breathing tube)?No, but I will.
Will you remember the surgery we had been waiting for since you were born that everyone thought would be successful, wasn’t?
No, but I will.
Will you remember when they told us they would be moving you to to the PICU (Pediatric Intensive Care Unit) because NI (Neonatal Intensive Care Unit) doesn’t know how to sedate kids like PI does?
No, but I will.
Will you remember when you came back from surgery on your tummy with more chords coming from you than I could count, on a huge bed that wasn’t meant for babies?
No, but I will.
Will you remember when they stretched your lower esophagus out of your upper back and your upper esophagus out your lower back?
No, but I will.
Will you remember the balloons on your back that couldn’t move and if you would even flinch, they would quickly give you more sedation meds?
No, but I will.
Will you remember when I was weak, Dad was strong and when Dad was weak, I was strong?
No, but I will.
Will you remember when I read and sang to you everyday during your thirty-four day medically induced coma?
No, but I will.
Will you remember one day while I was reading to you and your shoulder slightly twitched as if you knew it’s what I needed that day?
No, but I will.
Will you remember when they they took you down to surgery to try connect your esophagus to your stomach again, but couldn’t?
No, but I will.
Will you remember the chest tubes?
No, but I will.
Will you remember when they told us a chunk of your lower esophagus had torn off so they threw that piece of you away, resutured, and stretched again?
No, but I will.
Will you remember the brokenness I felt being torn between staying with you in the hospital and going home to be with your brothers, sister, and dad?
No, but I will.
Will you remember when they tried to do a trach change, but you went into cardiac arrest AGAIN and needed to be reintubated?
I wonder.
Will you remember when your ENT left his clinic that day just to check on you, told me we had been through so much, hugged me, and left to return to his clinic?
No, but I will.
Will you remember all the complications?
No, and honestly, I already don’t. There were so many.
Will you remember the first time you opened your eyes after your thirty-four day medically induced coma?
No, but I will.
Will you remember when a part of me wanted you to close them again because they creepily raced back and forth?
No, but I will.
Will you remember when your nurse told me I would get to hold my baby after almost two months of not being able to?
No, but I will.
Will you remember, although you were tiny, it took four people to carefully and slowly put you into my arms?
No, but I will.
Will you remember the tears immediately streaming down my face as I held you in my arms again?
No, but I will.
Will you remember when they told me we needed nurses in our home for up to twenty hours of the day to help take care of you?
No, but I will.
Will you remember when you were you six months old and I took you on your first stroller ride, up and down the hospital halls?
No, but I will.
Will you remember how excited, yet terrified I was the day they told me we could finally bring you home?
No, but I will.
Will you remember when they put your car seat on the ambulance stretcher, all the hugs, people staring, doctors and nursing crying?
No, but I will.
Will you remember the first day you were home after spending over seven months in the hospital?
No, but I will.
Will you remember the many who thought you’d never make it out of that hospital?
No, but I will.
Will you remember the first time we went back to the hospital two weeks after you were home to get your esophagus stretched?
No, but I will.
Will you remember all the surgeries? You’ve now had over fifty and you’re not even four.
No, but I will.
Will you remember all the times we spent in the ER because the regular clinic, urgent care, or hospitals closer to us don’t know what to do with a kid like you?
No, but I will.
Will you remember for over nine months people brought meals to our house?
No, but I will.
Will you remember the MANY cards, gift cards, and gifts we received?
No, but I will.
There is so much more I will remember, but you won’t and that’s how it should be.
There are times I wonder if you will remember the four times in your life you met Jesus. I wonder if you’ll be able to speak someday and tell me all about it. Until then, I will love you like every mother loves their children.
Happy 4th birthday my sweet boy!!!! Keep on being super!!!!
Happy 4th birthday Superman Sam!