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)

Here We Go Again

Sam will go to surgery again tomorrow (Monday). His GI surgeon and a GI doctor will stretch his esophagus again for the twenti somethingth time. His ENT will look to see if the sutures stayed intact on the bottom part of his Laryngeal Cleft, or the hole in his airway. His ENT has decided only to look and see if the surgery he did last month worked or not. Both Sam’s ENT and GI surgeons are going into this, hoping to formulate a plan based on their findings.

There are SO MANY things I could worry about with Sam. Of course, I travel down that path sometimes, but it gets me nowhere except stressed and fearful. There is SO little we can control. I know we are doing everything in our control, the rest is out of our hands. We choose to let go, and let God. When that truly happens, I can tell you from experience, the stress and fear factor quickly go away.

Pray the surgery done last month on Sam’s airway was successful. Pray for Sam’s surgeons, anesthesiologist, and anyone else caring for him. Pray Sam will recover quickly, his docs will be able to formulate a good plan, and we will get some answers. Pray for the rest of us too. I joke, Sam recovers faster than I do when he has surgery. As you can imagine, surgery days are pretty mentally and emotionally exhausting. As always, thank you for keeping us and our Superman Sam in your prayers.

When Bad News Almost Feels Like Good News

When bad news means fixable answers to questions you’ve been pondering, about your child’s health, sadly, it almost feels like good news.

I have to start by saying, we didn’t even get asked for Sam’s name when checked in at the surgery desk. I don’t think that was the first time. Many of the staff in surgery are on a first name basis with Sam. It is the most lousy and endearing feeling all in one.

Today was not so great, but it could be much worse. Sam’s ENT told us, “Most kids go one, two, and maybe three, but Sam goes one, two, three, four, five, six, seven, eight, nine, ten…”

In order for me not to write a book, I can tell you…

…Sam’s last surgery did not work. They did part of the surgery, but the rest will not get done until all the GI (tummy) stuff gets figured out.

…his esophagus needed to be dilated, AGAIN.

…they couldn’t check to see if his nissen surgery came unwrapped, which would be for the fourth time, because they weren’t able to pass the scope through. They will likely do other testing to check on this.

…we will wait to see what the biopsies tell us.

…Sam will likely get a more complicated feeding tube placed when they dilate his esophagus, AGAIN in four to six weeks.

Although there was quite a bit of heavy news, everything is fixable and that is the good news. The other good news is we were able to find answers to the elcalated retching and aspiration episodes. What’s another surgery when you’ve had more than thirty and you’re not even three years old yet?! I’m close to forty and I haven’t even had one people!

Even more good news, Sam recovered amazingly, once again. He makes anesthesia look easy. He makes surgery look easy. He makes hard stuff look easy, period. Maybe he really is Superman. He’s our Superman, that’s for sure.

“Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.” James 1:2