Cincinnati Called Today

I was thrown very off guard this morning when Cincinnati called to schedule Sam’s next surgery.

“Does July 23rd work for you?” she asked. I was thrown even more off guard! Does she know we live in MN? Does she know my son is trached?

“Yes I think it will work. We will make it work.” I responded.

Right now we’re processing. There’s a lot to think about and do in a very short amount of time. It’s exciting and nerve racking all in one.

We’ll figure it out.

We’ll get it done.

Sam Strong!

Faith Over Fear!

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.

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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Sam Update

Sam continues to keep all of us on our toes, but he’s had a really good, very healthy, last couple of months.

We did have one trip to the Children’s ER in November, but that’s only because we don’t have any other place to go. Sam decided to eat the heck out of a purple colored pencil, yes folks, a colored pencil. You don’t eat food, but you’ll gnaw on a colored pencil?! My thoughts exactly. I had no idea he was even chewing on anything. He was standing in front of the TV, watching who knows what. He coughed. Like normal, I went to suction him. Oh boy!!! Purple colored pencil everywhere! And then the scary part. Purple was literally spilling out of his trach. Not good folks! I had to suction him a good ten to fifteen times before his secretions were clear again. Kinda gross, I know. There were actually small specks of purple colored pencil in the suction tubing. Oh great. My first thought, aspiration pneumonia. After we finally suctioned all of the purple out, Mr. Superman went about his normal mischievous behavior acting as if nothing had even happened.

I went to bed mentally preparing myself it could be a long night. Nope. He slept great and showed no signs of aspiration pneumonia. Whew. It wasn’t until his speech pathologist at feeding clinic reminded us of the three day a week antibiotic Sam is on, which has been a God send for Sam this past year, that it dawned on us. Oh yeah, it’s highly likely the antibiotic kicked anything that may have tried to brew. Thank goodness. Aspiration pneumonia is not pretty.

The next day, I wasn’t worried at all. One thing I’ve learned about aspiration pneumonia is it comes on very quickly. Sam’s doctor still wanted him to be observed and x-rays done to be safe; hence, a very long, eight hour trip to the Children’s ER. It felt a little silly to me, but I can’t complain about an overly cautious doctor, right?! No, we are incredibly thankful for this doctor who has saved Sam’s life more than once.

Feeding therapy…

We’ve been going to feeding clinic for a couple of months now. This is a new, scary, and fun thing for us because it’s the first therapy we’ve been able to do outside our house. For the past two years, all the therapies have come to us, which has been and still is, awesome. Although there’s something about taking your baby, yes, I know he’s a toddler now, just let me have my moment, out in public. Sam is so darn friendly, waving at every person who walks by him. I feel like I have to say hi to people for him since he doesn’t have a voice. Most the time he’s just waving and no one sees him. Once they do, they can’t resist his sweet smile and the big, “Hello, I’m Sam.”, wave. Okay, okay, onto feeding clinic.

Although, he has a long way to go, he has made a lot of progress. In the past, even when Sam would touch different foods, he would instantly gag. Up until a couple of months ago, if food even came near his mouth, he would gag and end up needing lots of suctioning. Now, he rarely gags. In order for Sam to even be able to do a swallow study, he has to be able to drink an entire med cup (like the cup you get when you buy children’s ibuprofen or Tylenol) of a thickened liquid. Let’s just say, although he’s come a long way, he’s not even close to that. He’ll get there!

Because of the aspiration episode, Sam’s ENT has decided to do an endoscopy instead of waiting until he is able to do a swallow study. It’s kind of a bummer because it’s another sedation for Sam, but it will give us a concrete answer if the last surgery worked or not. It will tell us if the hole in Sam’s airway has been repaired.

Two years ago today, we brought Sam home with us for the very first time after living in the hospital for seven months. The word that comes to mind from two years ago…terrifying. I remember thinking… There’s no code blue button at home. There’s no button to push where thirty something people will immediately rush into Sam’s room and save his life. His life is now in our hands. I am not a doctor. I am not a nurse. I am just a mama, but we’ve got this. When Sam was seven months old, developmentally he was like a newborn. He couldn’t lift his head on his own and only moved his arms legs. Most didn’t think Sam would make it out of that hospital. Not only did he make it home, he’s thriving! He is now walking! He’s actually been walking since the end of November, but I realized I never posted this super exciting milestone. A milestone two years ago, that was not promising.

That was a bit long winded!

I guess I shouldn’t have bragged how healthy Sam has been. I’ve been working on this post the past few weeks or so, excited to publish it on his anniversary. And now, I’m sitting here, sleep deprived, with a very sick little boy, hoping and praying we don’t have to spend his anniversary in the hospital.

 

Swallow Study Cancelled

Well, I guess I was right to wonder how a swallow study is done on a kid who doesn’t eat or drink anything by mouth. My question lead speech, the specialty who performs a swallow study in combination with radiology, to talk with Sam’s ENT. They decided we have to do feeding therapy before they perform the swallow study. Bummer, but it’s okay. 

Yesterday was not a good day in our house. Let’s just say, the cancelling of the swallow study was not the only, nor the worst, of our bad news for the day. When it rains it, it pours, BUT there will be a rainbow. And, like I have said in the past, it could be so much worse. 

Again, don’t just keep Sam in your prayers. Each time you pray for our Superman Sam, pray for the hearts of me, Sean, Will, Abby, and Ryan. My kids lives have been turned upside down over the past two years, and to say all of this hasn’t affected them, would be silly. Someday, I will write about the other half of our story, but for now, I can only ask for prayers. 

Thank you for continuing to follow Sam’s story. I’m so thankful to the nurse at Children’s who encouraged me, so long ago, to start a CaringBridge site. You have no idea how much therapy I get from writing and reading previous posts and comments. I find myself going back and reading things I would have never remembered had I not journaled Sam’s story. Sometimes, if I’m having a bad day, I read past comments and my heart smiles again. Thank you for your encouraging words. They go a long way and are not forgotten. 

The Long Story on the Big Surgery

I have to admit, on the inside, I was a complete wreck the few weeks leading up to the surgery. My head was telling my heart things that were not pretty. Although, they were all justifiable, I was worrying, which I means, in my opinion, I wasn’t trusting God. When your surgeon tells you, many times, over a two year period, if the surgery doesn’t go well, we won’t take our son home with us, as in he will not make it, you can probably imagine, what was going through my head.

My husband would tell you he was pretty much a punching bag the last few days before surgery. He’s right. I can only say thank you to him for letting me. Ya know the whole Yin and Yang thing? Well, l can tell you, after twenty years. It’s for real, at least with us, it is. Corny, I know, but I couldn’t do this journey as well as I have without him by my side.

The day of surgery was, of course busy, but quiet. Sam’s nurse even commented on how unusually quiet Sean and I were that morning. We had Sam’s normal six bags to leave the house and this time, my suitcase packed. His normal bags, just to leave the house, include oxygen, an emergency bag (the size of a large diaper bag), feeding backpack, suction machine, pulse oximeter, and of course, a regular diaper bag. Although you would find many things in Sam’s regular diaper bag you would not in a typical toddlers diaper bag. Sam had his nebs, meds, a bath, trach and g-tube (feeding tube) cares done. On the outside, we were all ready to go.

Our nurse helped us pack Sam in the van and we were off, me driving and Sean in the back. Someone always has to be with Sam in the back, in case he needs to be suctioned or any other nursing duties need to be done. When we arrived at the hospital, Sean and I realized neither of us said a word to each other the entire drive, which is not normal for us. Later, Sean told me he was planning Sam’s funeral in his head. My thoughts weren’t very far off from his. My stomach was in knots. When we finally got to the hospital, we found our normal handicap spot and sat there silently for what felt like an hour, but was probably only a few minutes. As we started unpacking the van, Sean suggested going home. I said, okay, with a smile. I think we were both a bit serious, but knew we couldn’t.

We unpacked all of Sam’s things, strategically placed them in their special spots on the stroller, and again, quietly walked across the skyway to the Welcome Desk at Children’s, like we have so many times.

Sam was more than ready. Per the anesthesiologist who saw him this time, you would think he would not be this happy here, especially considering how many times he has had to go through this. He’s a trooper alright.

We said goodbye to Sam for the thirty somethingth time and went to our usual private family waiting room in the surgery waiting area. Eat. Pray. Wait. Pray. Wait. Pray. Wait. Pray. Wait…

Thankfully, there was a GI surgeon to check Sam out before the surgery to make sure he didn’t need another dilation, which would have cancelled the surgery, again. Sean would tell you he was kind of hoping that’s what would have happened. When GI was done, as they always do, he came and showed us the results. I’ve seen A LOT of pictures of Sam’s esophagus, and for the first time in Sam’s life, it looked beautiful!

As soon as the GI surgeon walked out of the room, Sean and I just looked at each other with fear in our eyes. I told him, “He’s (Sam) got this.” And again, we waited. Pray. Wait. Pray. Wait. Pray. Wait. Pray. Wait…

About two and a half hours later, which really isn’t too long in our world of surgery waiting time, Sam’s ENT surgeon walked into the room with a big smile on his face, two hands in the air, both his pointer and middle fingers crossed. Whew. I’ve been told he’s not a surgeon to be nervous or at least show any nervousness. He was definitely nervous that day. In the two years, we’ve know him, I’ve only seen him nervous once. He was very happy, but told us not to thank him yet, and “knocked on wood” several times. He looked at me with sincere relief, reminding me of what could have happened, and I know, a weight was lifted off his shoulders.

The reason Sam’s ENT didn’t want us to thank him yet is because we won’t know until November 27th if the surgery worked or not. Basically they sewed the hole in Sam’s airway shut and the sutures can easily break open, especially when Sam refluxes, which is something he does quite a bit.

They will do a swallow study to make sure the food only goes down his esophagus and not into his lungs. I’m not sure how they do a swallow study on a kid who’s never eaten anything by mouth. No one else seems to know the answer to that question either, but they scheduled the appointment so someone must know the answer. We’ll see. I like to burn those bridges when we get there. There’s no sense in worrying about something I have no control over. Yes, I’m eating my words right now. ; )

We will go into the appointment with high hopes, low expectations. As some of you might recall, I wrote about this on Sam’s CaringBridge back in August of 2017. My thoughts haven’t changed…

High hopes, but low expectations, leaves less room for disappointment. Some might disagree, but I believe life is easier this way and there leaves little room for premeditated resentment. William Shakespeare once wrote, “Expectation is the root of all heartache”. I think he was pretty spot on. In life, there is very little we can control. I want my kids to see I choose happiness over hopelessness and faith over fear in every situation we face. I want them to see how attitude can change everything, even when things don’t go the way we think they should.

I hope you have a Happy Thanksgiving! I know my list of things to be thankful for is pretty long, life being my number one, right now. One of Sam’s nurses shared with me something her wise mother, in my opinion, encouraged her to do every day, ever since she was a little girl. She told her, no matter what she’s going through, each day, find three things to be thankful for. Life isn’t perfect, we are not perfect, but I’ve found gratitude can sure make the road quite a bit smoother.

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!