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!
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.
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.
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.
Sam is getting a CT scan right now.
Let’s just say this day take took a sharp turn and we’re dealing with another set of issues. Please pray it’s just a fluke and they won’t find anything new.
Faith Over Fear.
Sam Strong!
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!
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.
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…
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!
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!!!!
