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.
Dr. Seuss
We choose not to stay in the Waiting Place.Dr. Seuss
Will (13), Abby (12), Sam (4)

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 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!!!!

Sam is 4!!
Happy 4th birthday Superman Sam!

 

 

 

 

 

 

Sam Update

It’s been a while since I’ve shared the latest on Sam. No news is good news, right? Pretty much.

It may also have something to do with distance learning, which kicked my behind. I am very glad school is out for the summer in our house. There may have been more yelling matches and apologies needed than I am proud to admit.

Sam was also able to do distance learning, which was the highlight of our days to watch. His face would light up as soon as the camera started. He thinks it’s pretty great to watch himself, and loved seeing his teacher, paras, and classmates. Our hearts melted every time.

Sam’s teacher, therapists, and paras had an end of the year virtual graduation for each child individually. His teacher dropped off a package about a week prior and had asked us to wait to open it until the graduation. Everyone talked about all the things they loved about Sam, he opened his gift and it ended with a video of pictures of Sam throughout the school year. The tears were literally streaming down my face.

This kid who isn’t suppose to be here…absolutely thriving.

Besides a few bumps, Sam has been very healthy and continues to put smiles on everyone’s faces.

As you know, I like to pull the perks in crummy situations. Most of us could agree being stuck at home wasn’t what we would choose, but there was good that came of it for us.

When Sam has just one appointment, it’s usually at least a four hour ordeal if not more. We try our best to group some appointments together in one day for less trips overall.

While quarantined, we were able to schedule Sam’s appointments virtually, which has been a huge blessing for us. An hour versus four or more out of your day is much better if you ask me and Sam is a very busy guy when it comes to doctor appointments.

One virtual appointment did lead Sam to needing an ultrasound in the near future. Unfortunately, it’s looking likely there was a complication of the surgery he had last fall, which may lead him to another surgery. Praying against yet another surgery for this guy.

Sam’s ophthalmologist wanted to see him in the clinic before his normal six month check up. Since January, he’s been closing his right eye when he is focusing on something. We thought maybe his nearsightedness had gotten worse. We were wrong. I’m not gonna lie, the thought of Sam having glasses made me a little excited. You can’t tell me, he wouldn’t be adorable. Am I right?!

The reason Sam has been closing his right eye is because his lazy eye has gotten worse. For right now, he has to wear a patch alternating eyes for an hour a day. Sam’s nurse and I practically laughed when we walked out of the clinic. There no way he’s going to tolerate that! Wrong again!

He’s been a rock star at wearing his patch. Coincidentally, his buddy next door has to wear a patch too. This definitely helps! And they couldn’t be any cuter.

Sam and Declan
We are the patch buddies.

Sam was finally able to get a haircut! We are always amazed at how fast his hair grows. I’ve lost track of how many haircuts he’s had. We are thankful we have someone who comes to our house to cut his hair.

Right now, Sam’s focus are his GI issues, which have always been a work in progress for him. The latest thing we’ve tried has been working successfully for almost a week. We’re praying this stays that way. 

Cincinnati…

Obviously with Covid, we had to put the brakes on our trips, which is not such a bad thing. Yes, we want to get rid of Sam’s trach and it holds us back from things, but overall he has a good quality of life so pumping the brakes is okay. More importantly, Sam has been healthy the past few months and we are grateful for that.

We received a phone call about three weeks ago from Cincinnati, they will be calling in June or July to schedule Sam’s next surgery. My guess is our next big trip will be in the fall.

That’s all for now folks!

Thanks for staying Sam Strong even in the midst of all the chaos in our world.

 

 

 

COVID-19 AKA Coronavirus

About two weeks ago, I did my usual run to the pharmacy to pick up Sam’s meds. We had been running low on hand sanitizer, which is a staple in our house so I figured I would pick some up.

I ventured over to the aisle where I knew I would find the hand sanitizer. As I turned the corner, I noticed empty shelves. You guessed it. There was absolutely no hand sanitizer. That’s silly, I thought to myself, I guess I’ll get it at Walmart. The shelves were completely empty there too. For real?! This can’t be a result of people freaking out about the Coronavirus?! I’ll try Amazon. Nope. I’m not paying that kind of money for a six fluid ounce bottle!! 

This is a true story. It’s hard for me to understand. As you are probably aware, there are many other things flying off the shelves besides hand sanitizer. Being precautionary is one thing, but wiping out stores tells me fear and panic are involved.

We are now on our last bottle of hand sanitizer and I still haven’t been able to find any. I’m not going to bend over backwards to find it and I’m not going to pay a pretty penny for it. We have kind people in our life who know how important hand sanitizer is in our house and have bought some for us.

People are living in fear. Fear of what might or could or might not happen. Being precautionary is one thing, panic is another.

We have a medically fragile son. How many are feeling and reacting to the Coronavirus, we could feel and react the same way each and every day. This is the reality of anyone who has a medically complex child. Every single day, germs are very BIG deal in our house.

We choose not to live in fear.  We do our best, but that’s all we have. We take precautions, but don’t let the weight of what the germs “could” do to Sam consume our minds. We continue to wash our hands and say our prayers because Jesus and germs are everywhere. I try focus more on the Jesus side of things because I believe His plan is bigger. 

Worry is a thief of joy. The more you dwell on your worry, the more and more tangible it becomes. A worry can’t change anything. It is just that, a worry. It’s our mind dwelling on the maybe. I have two things in my life right now that are legit things I could worry about. If I sat and thought about, continually talked about, read about, and listen to all the terrible things that “could” happen, I would likely drive myself nuts. We have to choose to make technology a blessing and not a cursing because unfortunately if we aren’t careful, fear and panic can easily set in.

Try not to let the fear of the Coronavirus consume you. Keep living the life you are hopefully already doing by good hand washing and staying home if you are sick.

Image result for faith over fear

Cincinnati Days #4-6

We are home, exhausted, and we successfully traveled with Sam! I don’t know if I’m quite ready to travel with him for fun, but I’ll get there.

Do you want to hear the good news or bad news first? I’d love to tell you there isn’t any bad news, but then I’d be lying.

Bad news…

On Tuesday, Sam was put under for a chest CT scan. He bounced back quickly from the anesthesia like normal. Later in the day we met with a pulmonologist and a gastroenterologist. The pulmonologist had a few areas of concern from the CT scan. She reassured us, she would look further into her concerns when she was able to see better with a scope the next day. Both doctors asked a lot questions, gathering even more information than they had already received from Sam’s docs at home.

On Wednesday, Sam had a triple scope. Skip this next part of you don’t care what a triple scope is.

The scopes/OR procedure we will do are called a flexible bronchoscopy (bronch), MLB (microlaryngoscopy bronchoscopy) and EGD (esophagograstroduodenoscopy).  We often refer to this as triple scopes. The bronch is with pulmonary and the physician uses a small flexible tube with a camera on the end to examine the upper airway, with a primary focus on the lungs. The MLB is with ENT using a small rigid instrument with a camera on the end to examine the upper airway to the level of the carina (which is where the lungs branch of left and right). The EGD is GI’s scope where they use a small tube with a camera on the end to examine the esophagus (throat), into the stomach, and the top part of the small intestine called the duodenum.

Cincinnati Children’s
Anesthesia is no big deal for me.

Sam had a harder recovery, but was put under the day before and had a lot more done with the scopes. They also dilated two parts of his esophagus. He bounced back by the end of the day.

Cincinnati
My mom’s glasses are much cuter on me. Oh, and I had a minor surgery today.

After the scopes and dilations were done,  the ENT, pulmonologist, and gastroenterologist came out to give us A LOT of information. Some old news and some new. We didn’t get the hopeful news we were expecting, and we learned things about Sam we had never known before. I wish I could say the new stuff was good, but it wasn’t.

We know Sam’s trach is not coming out anytime soon and we will be making several more trips to Cincinnati.

When we left the hospital on Monday, we left thinking Sam’s trach would never come out. It’s not the end of the world, but it is a bummer when that was our expectation.

Good news…

On Wednesday, after Sam’s scopes, the same doctor from Monday gave us a little more hope. I kept asking him if there was a chance the trach could come out someday. He gave the same gentle response each time, “We have a lot of work to do before we get there.”
We prayed for answers and I would say we certainly got many.

We were definitely at the right place. Sam’s perfect imperfections are their specialty, no doubt.

Is this hard? Yes, but there are tougher things in life. At the end of the day, we have a little boy who is well worth it all. Through it all, he continues to amaze us, and everyone around him, with his strength, courage, and so much more.

The team of doctors will meet this week to discuss a plan for Sam based on his history and their own findings. We will wait patiently to see what the next steps will be.

Let’s Get This Over With

We leave in exactly two weeks for Cincinnati and we now have a pretty sick little boy on our hands. Even though yesterday his symptoms weren’t so bad, his pulmonologist decided to go up on all his nebs, start his antibiotic neb and have us do a trach culture. I was hoping we could wait till Monday to do the culture, mostly for selfish reasons because I have to drive the specimen to Minneapolis. Yesterday, his symptoms didn’t seem to merit a two hour trip there and back, so I thought…

The little boy who was running around yesterday morning, barfing here and there, but happy as could be, has barely moved off the couch today and is currently on oxygen to help keep him comfortable.Poor buddy.

Poor buddy.

I’m so glad we didn’t wait to do a trach culture. The results take seventy-two hours so we are hoping to stay out of the hospital and come up with a plan on Monday. Or even better, Sam kicks this thing before then.

Okay, so let’s pray he kicks whatever this is! He needs to be healthy before we go to Cincinnati. He will be put under two of the days we are there and if he doesn’t clear his pre-op appointment, our trip to Cincinnati will be postponed. Nope, not happening.

Sam went for almost two whole months symptom free! That’s pretty good for Sam in the winter! Let’s get this over with, little buddy. You’ve got this!

I believe in the power of prayer. Even if you don’t, if you would throw one out there for my sweet, little boy, we would greatly appreciate it.

As always…

…Sam Strong

and…

…Faith Over Fear!

We want this guy back!
We want this guy back!

This guy.

Cincinnati Bound

It’s official.

We will be going to Cincinnati Children’s in February. The first trip will be a series of back to back appointments and scopes. The team of doctors have gathered what they know about Sam’s history from his doctors here. Once they gather the information from our first trip, the doctors will meet again and formulate a plan for Sam. We are hoping and praying some of the plan will be able to be carried out by our doctors here. Bottom line, let’s hope they can figure out a way to get rid of Sam’s trach (breathing tube), which would be a definite game changer for Sam and our family.

Since the referral process started back in August, I have been doing my homework figuring out how we will get Sam to Cincinnati. FAA has SO many regulations. And flying with a complex child gets you no free passes. If anything, it’s the opposite. It’s been an interesting and sometimes frustrating process with a few tears shed. Okay, more than a few. I was surprised by one particular phone call I made to the airline we are flying. It was a specific number to call if you are flying with a person who has disabilities. Seems like the right number to call, right? Let’s just say, the person on the other end was not helpful and insinuated we fly first class. Yes, that was a call that ended in tears. Half the time, when I call places to ask questions, they have no idea what I’m talking about, which is not abnormal when it comes to Sam. The other day the gal who handles Sam from our insurance company told me, most of the things that have come up with Sam, we’ve never seen before so we’ve had to make it up as we go. Side note. Thank you Lord for insurance!

I’ve dived into ALL of the resources I can. I was able to connect with another mom whose daughter was trached and they traveled with her. She reassured me, there will be hiccups along the way and I will probably be sweating profusely by the time we board, but it sounds like I’m on the right track and asking the right questions. It felt good to talk to someone who’s been there. The trach mama world can be an isolating feeling. Although I have some pretty amazing friends who might not “get it” and really don’t try to, but are really good listeners.

The plane tickets are bought, the hotel is booked, and the car is rented!

The rest will get figured out with a lot of help from Sam’s respiratory therapist, nurses, and many others. So thankful for all the help!

Sam has been very healthy for the past month. Sean (my husband) would tell that’s because he hadn’t been in school. Maybe, but he LOVES school and until his docs tell us to pull him, I’ll keep sending him. Praying Sam will stay healthy until Cincinnati and will get to stay in school.

Overwhelmed

This past week was incredibly overwhelming and it wasn’t because things were bad. It was the exact opposite.

Our family and friends have had two benefits to raise money for our travel expenses to and from Cincinnati. People we don’t even know donated silent auction items or gave money to our family. Wow. I didn’t know that many people liked us. Lol.

I knew these events were happening, but I kept pretending they wouldn’t come to pass. They did. I even tried to say, “Thank you, but no thank you.” All I could think is, we don’t deserve this. There might be a lot of crud going on in our world, but I continue to be amazed at the good in people, not only now, but the past three years. I still don’t feel like we deserve any of this, but can tell you, a heavy financial weight has been definitely lifted off of our shoulders. Now, we can focus on how we will get Sam to Cincinnati logistically, not financially.

The other day, I made a huge deposit into an account I set up in Sam’s name. I stood there while the bank teller counted the money and fought back tears. I bit my bottom lip, a subconscious thing I do when I am trying to get my mind on something else. When the teller got to the checks, I did my best to wipe the tears away without anyone noticing. This is silly, I told myself, pull yourself together. Per policy, another bank teller came over to double check the checks. It was all over after that. The floodgates came. I literally sobbed like a baby. So embarrassing. My heart was so overwhelmed, I couldn’t control the tears no matter how much I tried. The teller was so sweet, sincerely asking if I was okay. I reassured her, my tears were happy tears.

If you had any part of any of these events, thank you. Our hearts are so overwhelmed with gratitude, we can barely contain it.

Sean and I came home and both agreed, the two days felt like a surgery day, which means complete exhaustion. It felt like the thoughts that linger after your wedding day. Did we acknowledge and thank everyone who came? Oh, no I didn’t even know that person was there?! Off and on, I keep having to stop the tears from coming, but again, they are happy tears.

Especially now, in a world where we are always “busy”, giving your time is a gift that doesn’t go unnoticed by the receiver. In my opinion, time is the greatest gift you can give someone. I know the time and planning that went into each of the two events on behalf of Sam was a lot. Something like that doesn’t just happen. The monetary gifts given to our family the past couple of weeks would not have been made if people did not give their time. At the end of the day, people gave their gift of time and that is worth just as much.

THANK YOU to anyone who helped in any way whether with your time or your financial contribution. Words truly cannot express our gratitude.

We found out our first travel dates to Cincinnati! We will be going at the end of February!

Sam Strong!

Cincinnati here we come!

Why Target?

Target.

I don’t know what it is about Target.

Every time I go to Target alone, I get super emotional. There are moments my body seems to freeze up and time feels as though it is standing still. I walk by the sweet mamas talking to their sweet babies while their cute little legs are dangling out of the cart. My heart is happy for them and hurts at the same time. I think about how grateful I am I was able to take my first three sweet babies to Target. Sam has never been to Target or in any store for that matter. Or I go to the baby food section and the only thing I buy is green beans. I don’t buy anything else because the only thing, besides formula, we pump into Sam’s gj-tube (feeding tube) is green beans. For a moment, I envy the other mamas who are buying other baby food flavors. Stupid, I know. Then I tell myself to buck up and feel grateful for nurses and feeding tubes and life.

Suddenly, it hits me.

I figured it out.

PTSD. Post-traumatic stress disorder.

Yep, kind of weird, I know, but it’s a thing and it can happen to anyone who’s been through a trauma.

When Sam was “living” in the hospital, I basically lived there too. On the rare occasion I did leave, it was to be with my family or quickly pick-up some toiletries. We lived in twelve different rooms in the seven months Sam was there so I learned to live very sparingly. Guess what store I went to on my rare trips out of the hospital? Yep…you guessed it…Target.

I vividly remember standing in the checkout line at the Target closest to the hospital during an extremely grim time for Sam. I felt like I was the scene in a movie. I looked at the person in front of me, behind me, and everywhere around me wondering what their story was. An overarching question constantly on my mind still to this day…“What’s their story?” I remember failing to fight back tears as I stood in line. I quickly wiped away the small tears as I came closer to the checkout. It didn’t help there was a proud daddy with his little boy who couldn’t have been more than a year old in front of me.

It’s crazy how sounds, smells, and/or certain places can bring back vivid moments in your life. Whether they were moments of peace or fear, they were real to you. It’s those moments of fear that seem to hit us the hardest. Fear can wrap around you so tightly, it can almost feel hard to breath. It can happen even if you haven’t experienced a trauma. I’m guessing we have all had moments like this. When you can stand in faith and know fear is a liar, your happiness can’t be taken. That grip of fear slowly releases and a peace that passes all understanding sets in.

Still almost three years later, I have to fight with myself anytime I step foot in a Target alone. Some days there is more fighting than others, but every time I walk out those sliding glass doors, I choose to smile, remind myself, it could be so much worse, and ponder the MANY things I am grateful for.

Next Steps

Where do I begin?! Ya know that whole mentally preparing myself thing I’ve talk about? I don’t think I did enough of that this time. Or maybe we just got a lot of overwhelming information. Or maybe it gets harder and harder to send Sam off to surgery as he gets older and more aware of what’s going on. Or maybe it’s a combination of both. Or maybe sometimes I have my moments.

Sam is definitely starting to figure things out. He does just fine until everyone starts coming in to go over things. This time his anesthesiologist said he was pretty feisty when they brought him back to the operating room. Poor buddy. After looking at Sam’s history, the anesthesiologist said “Wow, he’s got quite the history. It’s v.e.r.y rare a kid makes it to three pages.” We all joked saying Sam should get a medal or trophy or something. I could have laughed or cried. I laughed. Laughing is much better for the soul.

Sam after dilation
He was super upset after surgery until he saw his mama. He fell asleep instantly, cuddled in her arms.

Trying to explain everything and making it make sense to the general public is tough. I’ll do my best.

ENT…

Because of the GI findings, Sam’s ENT has decided to stay in the background for quite a while. He wanted us to talk to Sam’s pulmonologist as he said Sam’s airway is really red and inflamed. This is likely due to Sam’s most recent illness, which is a whole other story. Thankfully, after looking at the pics, Sam’s pulmonologist wasn’t worried. The good news…the small part of Sam’s airway he fixed last month was successful!

GI…

We got answers, but not the greatest news. It’s a lot of info, but in short, his GI surgeon is going to talk to docs from Boston as they are stumped and not sure what to do next. After looking, they discovered his tummy surgery came undone or unwrapped. The surgery, last done in November of 2017, that’s failed three times now. It’s likely, the unsuccessful surgery is due to Sam’s violent retching episodes, which in turn wreak havoc on his already stressed esophagus. Either way he’ll have another open surgery sometime this summer. Open surgery…yuck. They will do some more tests and dilate his esophagus again in four weeks. The good news…he once again recovered beautifully!

Once again, we wait…patiently.

We are use to getting bad news and the unknown. Hope is hope, just that, and it’s a phenomenal thing. We cling to hope.

“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”
(2 Corinthians 4:8‭-‬9 NIV)