Overall, Things Are Good

Sam had a pretty good night.

He hasn’t been awake too much today, but when he is, he’s pretty ticked off. Pray for pain management.

From a surgical and PICU standpoint, things look good.

He hasn’t peed yet so we’ll take prayers for that.

Continued prayers for no leaking.

It’s so hard watching him have to go through all of this. My goodness, this little guy is so strong!

Faith Over Fear!

Sam Strong!

One Hurdle Cleared

THANK YOU for all your prayers! After over a SEVEN hour long operation, everything went a-okay.

Exhausting. It’s like you hold your breath for seven hours. Exhale.

And now for the next hurdle…recovery. The next few days will be an even bigger hurdle to jump.

Remember to breathe.

Please pray for no post-operation complications, specifically, no leaking.

Faith Over Fear!

Sam Strong!

Surgery Jitters

It’s now been over fifty times.

Over fifty times his little body has been put under anesthesia. Over fifty times needles, scalpels, scopes, and more have messed with his insides and outside. Over fifty times of watching my little boy slowly roll away on a hospital bed.

Just because we have done it over fifty times, doesn’t mean it gets any easier. If anything, it gets harder. The older Sam gets, the more aware he becomes of what’s going to happen. He’s a smart little boy, knows the routine, and knows it’s not going to feel good. That whole white coat syndrome you hear about, it’s a thing.

This happy little guy has been through so much. He probably won’t remember all of it, but this mama and daddy’s hearts do and will.

We can worry or trust God, but we can’t do both. We choose to trust in a God we believe has a perfect plan for Sam.

Pray for our little Superman on Wednesday. Pray for our surgery jitters. Pray for the surgeons hands, for his anesthesia team, and all the other medical staff who will be involved. Pray Sam doesn’t throw any curve balls, as he’s unfortunately infamous for. Pray for a smooth and quick recovery.

Sam Strong!

Faith Over Fear!

Next Steps

All the stars have aligned or in my opinion, God had a plan.

Overall, Sam’s been doing well. The temporary fix seems to be holding up for the most part.

I can’t help but think there was a reason we had to cancel the first trip to Cincinnati. If we would have gone and Sam would have had his airway surgery, the likelihood of the surgery being successful would be slim to none with Sam’s new diagnosis.

Again, as we suspected, the second trip was canceled as well.

If I go into the details, I’ll have to write a novel.

Our surgeon here consulted with the main surgeon in Cincinnati.

Sam is scheduled to have surgery here on September 30th. It’s a big one, with a six hour OR time slotted and a five to seven day stay in the hospital. That’s without complications.

Minor surgeries, which have been the bulk of Sam’s now fifty plus surgeries, have always gone really well for Sam. Major surgeries, on the other hand, haven’t always gone as well.

This surgery will go well, without complications.

Are we nervous? No doubt! We choose not to worry about the things we cannot control.

He will be in the best hands and we believe this will be a final fix to Sam’s GI issues.

We believe Cincinnati will follow.

Faith Over Fear!

Sam Strong!

Curve Balls…

…are a constant when it comes to Sam.

We are now less than two weeks away from surgery.

He’s been having some rough days off and on. His docs had put him on all the stuff a few days ago as a precautionary until surgery. Usually the stuff kicks in fast.

Tonight got tough.

After a phone call, his pulmonologist wanted us to bring him in. No, he’s fine. He’s been much more sick than this and we’ve kept him home. “Do you think he needs a dilation?”, she asked. “Yeah, that’s what I’m starting to think.”, I responded. She ends our conversation with, “I’m sorry.”

She knows. She knows what Sam’s been through. She knows what we’ve been through. She’s knows it better than most. She knows it’s not easy to pack him up and bring him in. She knows he’s likely okay to stay home.

She’s right though. She also knows if he’s inpatient, it will be A LOT easier and faster to get him into the operating room.

She knows his surgery got canceled a few weeks ago. She knows his surgery is rescheduled in less than two weeks.

She called me back before we left our house. “I talked to Dr. Surgeon and Dr. Gastroenterologist. [They both have names, but I like to be respectful of their privacy.] They said between the two of them, they will get Sam on the OR schedule in the morning.”

We are now sitting in the Emergency Room, waiting for a room upstairs. Waiting. Waiting. Waiting. Waiting. Waiting. When you are in the hospital, there is so much waiting. Covid makes the wait even longer.

The lV is in without too much effort. Whew. Sam isn’t always the easiest poke. Although if you could hear him cry, they would have probably heard him a few rooms down. It’s sure a lot more heart braking to watch your child scream, but no sound comes out. It’s something you never really get use to.

Maybe I’ll get some sleep tonight. I just need a little.

He’s sleeping now. That’s all that matters.

Now I know I’m not the only one praying for my family and my sweet little boy.

Tomorrow I will have good news for you.

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!

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!

 

 

 

 

 

 

Surgery and Then Some

Overall Sam’s surgeries went well. The second surgery was a bit more invasive than we expected, but with a few restrictions, he was back at school the next day.

Recovery has gone well for the most part. We had to keep an eye on some bleeding, but thankfully that subsided.

About a week ago he started more secretions and then retched (threw up) the entire night. After making a call to surgery, we were advised to have Sam be seen either by his pediatrician or take him to the ED (Emergency Department). In order to avoid the ED, I was on the horn at exactly 7:30 that morning as soon as the clinic opened. Sam’s pediatrician wasn’t there, but we were able to see another pediatrician who also sees complex kids. So glad we were able to avoid the ED.

A small recap that morning…

Get the report from the night nurse on Sam’s night after we finally got him to sleep again around 3:00am. Check the discharge paperwork to see the section on, “When to Call the Doctor”. Call the doctor. Bummer…the doctor said to get him into his pediatrician or if were not able, go to the ED. Give the report to the day nurse coming on. Oh yeah, a new nurse is training today. Great day for that. Oh well, it will be good experience for her. Try to keep a smile on my face as introduce myself to the new nurse and hopefully make her feel welcomed. Wake Will and Abby up for school. Make lunches. Eventually tell Will he’ll have to wear dirty socks to school after he, to no avail searched for clean ones. Take Will and Abby to school. Take a shower. Throw in a load of laundry. Run to the store to get Pedialyte since Sam couldn’t tolerate his formula overnight. Throw the load of laundry in the dryer. Double check we have all five bags. Buckle Sam in his carseat. Whew! All that in only a few hours! Only twelve minutes later than when we wanted to leave! We did it! Nice work ladies!

Seeing someone who doesn’t know Sam was a bit interesting. After some discussion and me giving the pediatrician a very small dose of Sam’s medical history, he checked out Sam’s surgery area. I knew as soon as he started fumbling over his words, he was concerned. He danced around his words until I stepped in and helped him finish what he was trying to say, “So, you think we need to get an ultrasound.” He shook his head saying yes. His concern was on the left side. Sometimes I wish there could be something in Sam’s charts that could forewarn medical personnel not to sugar coat things for me. It’s been over the three years now and I know when doctors are giving concerning or difficult news. I wish something said, “She can handle the hard stuff and won’t freak out. Give it to her straight.”

Surgery met us in the ultrasound room. Knowing Sam well and his history from the beginning, she was ear to ear smiles to see how well Sam was doing overall. She also had a good chuckle when the ultrasound tech shared there was a hematoma on the left side which wasn’t too concerning, but there was a small hernia on the ride side. The reason surgery had a chuckle is because she thought it was a classic Sam move to have a little twist in his story.

At the end of the day, the retching was likely related to a cold Sam was brewing, which I also had to explain to the pediatrician after the ultrasound. I reassured him the throwing up wasn’t something we would have brought Sam in for otherwise. We brought Sam because it was so close to surgery and they wanted to be sure the retching wasn’t surgery related. I explained the retching is unfortunately the nature of Sam when he gets a cold.

With an extra boost of nebs, or twelve nebulizer treatments, four times a day, Sam seems to have fought off the cold. Thank goodness!

Just Another Surgery

Tomorrow, Sam will have his forty somethingth surgery. I thought this string of texts between Sam’s teacher and I was kind funny and also shows our perspective on surgery.

Me: Hello! I just wanted to let you know Sam will not be at school this Thursday (10/3) or next Wednesday (10/9). He has a pre-op and then surgery next week. He usually recovers very quickly so hopefully he will be able to be back at school the next day!

Sam’s Teacher: Wow. Ok.

Me: Lol. After sending that…I realized not everyone thinks surgery is no big deal. My world is a bit skewed. 😂

Sam’s Teacher: Perspective is everything.

Me: It sure is. 😊

Me: And attitude. 😃

Sam’s Teacher: Amen.

When Sam was in the hospital a few weeks ago, his GI doc thought it would be a good idea to scope him after he was feeling better. They will look to see if his esophagus is stricturing again. Let’s just say, based off Sam’s symptoms, all of us will be a little surprised if Sam does not need another esophageal dilation.

Once GI is done with their part, Urology will step in and do theirs. This is the 2nd of Sam’s new diagnoses I was talking about that would need surgery. The doctors assumption was correct, Sam would be having surgery in the near future. We did what Urology said, and asked to have them scheduled as well. Quickly, the surgery with both docs was scheduled, which meant we would need a pre-op exam before then. How many times does one have to have surgery in order to get a free pass on pre-op’s?! Just kidding. Thankfully, Sam’s pediatrician almost always finds time for him in her busy schedule and we got the pre-op done.

Even though surgery doesn’t seem like a big deal to us, it doesn’t mean we don’t get nervous. The easy part comes from knowing how to prepare and what to expect before and during. We know how many hours before to stop Sam’s formula and when to start and stop the Pedialyte, exactly where to park, where to go, where the bathrooms are, what the doctors, nurses, surgeons, and anesthesiologists will do and ask, and where to get something to eat. Although a little nervous, we will leave the outcome to Him.

Don’t forget to say an extra prayer for Sam tonight and tomorrow!

Sam Strong!

Faith Over Fear!

Image result for it doesn't get easier you just get stronger

Home

I cannot believe I did that for over seven months. That was an awful long four days. It’s definitely harder now that Sam is older and much more aware. At the beginning of Sam’s life, the hospital was his home. Thank God, the hospital is no longer his home, but he is fully aware of that.

Initially, they kept Sam for dehydration. Sam’s trach culture came back with an active tracheitis. Not surprising. That’s the cursing of having a trach (breathing tube). I often describe having a trach as a blessing and a cursing all in one. Essentially, Sam caught a cold and that cold turned into tracheitis. First there’s a flood of secretions, then it’s hard for him to control all of them, and that leads to almost constant retching. Usually we can run his feeding pump at a pace with Pedialyte that’s just enough to keep him hydrated. Not this time. So, I guess this is a classic example of it’s never “just a cold” for Sam.

Thankfully, Sam is on the mend and nearly back to himself.

In the past three months, Sam has been given three new diagnoses, two of which will need surgery down the road.

I’m not gonna lie, and tell you I wasn’t a bit overwhelmed after spending four days in the hospital and also learning of another diagnosis that will need surgery.

The second of the three diagnoses we found out two weeks prior to Sam’s hospitalization. We were referred to a new specialty. The doctor came into the room and jokingly said, “Well, I looked over his charts and see his one hundred fifty surgeries.” I responded with a sincere smile on my face, “Well, he hasn’t had that many, but yes, it’s been a lot.” He smiled and said, “Let’s take a look at him.” It only took him a few moments to feel and diagnose Sam. The doc nonchalantly said, “Make sure they schedule me in on the next surgery and I’ll snip, snip. My part should only take about twenty minutes.” He had some very kind words and walked out of the room. Sam’s nurse and I instantly laughed how the doc assumed Sam would be having another surgery sometime in the near future. Laughing is better than crying.

Fast forward a couple of weeks. Sam gets sick. We end up getting admitted to the hospital. While we were there, Sam wouldn’t let me put him down. Except for at night, it was him on my lap sleeping, crying, or retching. Through all this I noticed a clicking in his left hip. I brought it up to the Intensivist (cares for seriously ill infants and children or those who need a high-level of monitoring in a specialized inpatient unit). He said he could look, but he’s not the expert in that area. He tried to call an orthopedic doctor/surgeon to see if he/she would take a look, but was told they do not come up on the PICU (Pediatric Intensive Care Unit) floors and it would need to be an outpatient visit. After the third day, the clicking turned into a popping sound and seemed to be much more profound as time passed. I kept telling myself it was in my head until it got to the point you could actually see his hip almost jolt in and out of place. It sounded and felt yucky. After showing the Intensivist again the next day, he thought he would try orthopedics another time in hopes a different doc might be on. He said he would try work his magic. To my surprise, his magic worked, an orthopedic surgeon came and checked Sam out.

It wasn’t long before she diagnosed Sam. The resident doctor with her quietly said something almost under his breath to the orthopedic doc after feeling Sam’s hips. She quickly nodded her head at him and returned talking to me. That’s when I knew it wouldn’t be great news. Basically, we know Sam will eventually have another surgery that will leave him in a body cast for up to four months. Wah. Wah.

He was sent home with a brace to wear at rest until we could be seen outpatient at the specialty clinic. I’m not so sure the doc was fully aware of how active Sam is. The brace wasn’t so bad when Sam wasn’t feeling great, not so much now. We’ll do our best until then.

Sam was elated to be back at school last week and sounds like everyone was happy to have him back. I believe Sam will be stay healthy and stay in school where he is thriving. Believe with me.

We continue to be Sam Strong have Faith Over Fear Always.

Sam
Home from the hospital and feeling better.