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.

 

 

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

The Appointment

I called Sam’s ENT to find out when we were going to schedule his bronchoscopy, the test they decided to do instead of the swallow study, to find out if his last surgery worked or not. I figured since I had already talked to Sam’s ENT previously, he would just say to go ahead and schedule the bronchoscopy. I was wrong. He wanted to see us in the clinic first. What?! Usually, during cold and flu season, Sam’s docs try to keep us out of their offices. You see, I’ve known this doctor for over two years now. He doesn’t give bad news over the phone. What bad news could he give us though? It didn’t make sense to me. My mind was racing on why he wanted us to come to the clinic.

I didn’t make up too much in my head. Here’s where my thoughts went. They would do a bronchcoscopy and if the surgery didn’t work, Sam’s ENT would send us to Cincinnati. I’m sure you’re wondering why in the world I would think that. A little history…

When Sam was first diagnosed with a Type II Laryngeal Cleft, the day after he had his third code, his ENT told us if Sam was a Type III or IV, he wouldn’t touch him and would send us to Cincinnati, the pediatric airway hospital of the world. We now know Sam’s cleft is a severe Type II, very close to Type III. They range from a I to a IV, a type IV being the worst case scenario. Kids with a Type IV don’t generally make it. If any of that makes sense, that’s why I made up he might send us to Cincinnati, which if I thought a lot about it, felt very overwhelming. I couldn’t think of any other bad news he might give us. I wasn’t even sure he was gong to give us bad news. I was only assuming.

I know they say, never assume, but I have to say, in this situation, I’m glad I did.

We waited about a month from the time we scheduled the appointment to the day of. Like Dr. Sues says, the Waiting Place is “a most useless place”. For the most part, I was able to stay out of the Waiting Place.

Appointment day…

We learned, Sam’s ENT did have us come in because he was going to deliver, what he thought, was bad news. He told us they would do another bronchcoscopy to see if Sam’s surgery worked. If it didn’t work, they would do the surgery again. Whew. I told him what I had made up in my head. He laughed and said he could send us there if we wanted. Nope! I know, without a doubt, our ENT has Sam’s best interest in mind, and if he did not feel qualified, he wouldn’t have done the surgery. I’ve been told by more than one person, and it’s evident, he holds a special place in his heart for Sam. Every time we see him, he reminds me how sick Sam was. He is always amazed at how well Sam is doing now.

His other bad news was that it will be highly unlikely Sam will be decanulated this year because of all of his aspirating episodes. In other words, it’s not likely Sam will get his trach out until next year. Also, not a big shocker for us. We had already suspected that was going to be the case, knowing he has been aspirating a lot. Again, I’m glad I assumed, better yet, mentally prepared myself for this appointment.

In the meantime, like I mentioned in my previous post, Sam has been having some new GI (tummy) issues. Next Monday, Sam will have a bronchcoscopy with two ENT surgeons with the possibility of surgery, and now they have also added an upper endoscopy with a GI doctor, to hopefully be able to answer questions on Sam’s GI stuff.

Pray for Sam on Monday. The older he gets, the more aware he becomes. He will be put under for the thirty somethingth time and that doesn’t mean it gets easier for him or us. Pray the last surgery worked and they will not have to do it again. Pray we will get easy, fixable answers to his GI issues.

This kid sure likes to keep a lot of really smart, highly educated people, and his family guessing. He might be adding some gray hairs, but he is definitely worth it.

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Short Story on the Big Surgery Today

Surgery is done.

We are home.

We’ll find out in four weeks if it worked or not.

Besides a few, quick scary moments, Sam is doing awesome!

We are very tired, and even more, mentally drained.

We can’t thank you enough for your prayers and meals!

That’s the short story. The longer version is coming soon…

Sam Strong!

Faith Over Fear!