Sam Update

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

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

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

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

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

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

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

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

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

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

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

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

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

Sam and Declan
We are the patch buddies.

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

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

Cincinnati…

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

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

That’s all for now folks!

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

 

 

 

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.

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

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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Pseudomonas

Well, it’s been a bit since my last post. If you can imagine, life gets a little busy juggling a complex child and three other kids. Not too long ago, someone bought me a journal. The cover reads, “There are no ordinary days.” So true, for all of us, really. Although, if I’m being completely honest, I can think of countless ordinary days before Sam. When I talk about my ordinary days to my close people, they would tell you my days are not so ordinary. I’m okay with that. We usually laugh and I say, “You can’t make this stuff up!” Laughter, for sure, is the best medicine. Thank you to my besties for listening about my not so ordinary days. I couldn’t do this journey without you.

We did end up having to spend Sam’s anniversary in the hospital, but thankfully we did not get admitted. It couldn’t have been more than an hour after I posted my last post, we were instructed to take Sam in. Bummer. He was a pretty sick little guy. Poor buddy. Although, it was the fastest trip to the Children’s ER we’ve ever had. Like any of our ER visits, they did blood work, a trach culture, and x-rays. Round trip, it was only five hours. That’s record time!  The nurse in the ER congratulated Sam on his anniversary. We all laughed, agreeing he had to pay a visit to his alma mater for his anniversary. Laughter, the best medicine.

Okay, so how many of you Googled that one? Pseudomonas? It is the type of infection or type of tracheitis Sam had growing on his trach culture. It’s not the first time Sam’s had it. It’s a scary one and we do everything on our part to keep it away from Sam, but unfortunately there’s only so much we can do. It’s not something us normal people have to worry about. You’d have to have an artificial airway, like Sam, or an open burn wound, or be in a hospital hooked up to a bunch of stuff. Thankfully, we were able to treat it this time and once we knew what it was, we were able to treat it quickly.

I’d like to say things have been going really well for Sam since then. Let’s just say, we’ve had an eventful February. Sam’s has some GI stuff going on. Pray we can get it figured out and get him back on track, or at least back on “his” track.

There’s no doubt, this kid keeps all of us on our toes!

Sam’s been walking since November and I’ve been meaning to post a video since then. Here it finally is! Click here to see Sam walk!

Sam strong!