Quick Sam Update

We decided to reschedule Cincinnati. After realizing Abby had soccer tryouts while we would be gone, we thought we didn’t want to not be here for her. We also would have had less than a week and a half to plan. That would be a tall building to leap with Sam!

Now we are waiting to get another phone call to reschedule. We thought we’d here back from them this week, but we didn’t. Hopefully we’ll get a call next week knowing they want to reschedule for August.

When it comes to Sam, we’re always waiting for the next thing. When you are in a constant Waiting Place under circumstances at no fault of your own, it’s much healthier to live in the moment than to dwell on the waiting.
Dr. Seuss
We choose not to stay in the Waiting Place.Dr. Seuss
Will (13), Abby (12), Sam (4)

The Abbreviated Version

It isn’t until I see Sam’s story on paper or I’m asked to share it at a volunteer event, I think, Holy Smokes!!

I shared my “What Will You Remember” post with one of Sam’s nurses he had while “living” in the hospital.

Her: Oh my gosh!!!! We were out on a boat today and I literally was thinking about Sam! I honestly CAN NOT believe it was 4 years ago!

Her: He changed my life!

Her: That post made me bawl 😭😭😭 so perfectly said! You have all been through SO much.

Me: I don’t even realize it until I write about it!

Her: And that is truly the abbreviated version. Insane.

That hit me hard. The abbreviated version. Wow. So true. Crazy. 

Here’s the thing.

I don’t want discount Sam’s story and I know it’s significant. I know it’s a big one.

I also know so many have been through so much more and it could be so much worse.

Side note, never tell anyone else when they’re going through a rough patch, it could be worse. That’s a whole other topic.

It’s completely different when it’s coming from the person experiencing the tough time. I believe when your having a “poor me” moment, because we all have them at times, acknowledging others are going through or have been through worse, is not a bad thing.

Sometimes it’s not even a “poor me” moment. It’s truly a crisis situation.

Either way, it’s important we don’t stay at the pity party for too long. Pity turns into wallow and self loathing. Then we’re in trouble. When we’re here, it’s a lot harder to be there for the other people in our lives because we’re focused solely on our self.

Having a moment is okay, but staying there isn’t good for anyone.

For me, acknowledging “it could be worse“ helps me see the bigger picture and focus on the things I am grateful for. It quickly gets me out of the party no one wants to be at for very long.

It’s that self talk that says…

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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!

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!

 

 

 

 

 

 

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.

 

 

 

COVID-19 AKA Coronavirus

About two weeks ago, I did my usual run to the pharmacy to pick up Sam’s meds. We had been running low on hand sanitizer, which is a staple in our house so I figured I would pick some up.

I ventured over to the aisle where I knew I would find the hand sanitizer. As I turned the corner, I noticed empty shelves. You guessed it. There was absolutely no hand sanitizer. That’s silly, I thought to myself, I guess I’ll get it at Walmart. The shelves were completely empty there too. For real?! This can’t be a result of people freaking out about the Coronavirus?! I’ll try Amazon. Nope. I’m not paying that kind of money for a six fluid ounce bottle!! 

This is a true story. It’s hard for me to understand. As you are probably aware, there are many other things flying off the shelves besides hand sanitizer. Being precautionary is one thing, but wiping out stores tells me fear and panic are involved.

We are now on our last bottle of hand sanitizer and I still haven’t been able to find any. I’m not going to bend over backwards to find it and I’m not going to pay a pretty penny for it. We have kind people in our life who know how important hand sanitizer is in our house and have bought some for us.

People are living in fear. Fear of what might or could or might not happen. Being precautionary is one thing, panic is another.

We have a medically fragile son. How many are feeling and reacting to the Coronavirus, we could feel and react the same way each and every day. This is the reality of anyone who has a medically complex child. Every single day, germs are very BIG deal in our house.

We choose not to live in fear.  We do our best, but that’s all we have. We take precautions, but don’t let the weight of what the germs “could” do to Sam consume our minds. We continue to wash our hands and say our prayers because Jesus and germs are everywhere. I try focus more on the Jesus side of things because I believe His plan is bigger. 

Worry is a thief of joy. The more you dwell on your worry, the more and more tangible it becomes. A worry can’t change anything. It is just that, a worry. It’s our mind dwelling on the maybe. I have two things in my life right now that are legit things I could worry about. If I sat and thought about, continually talked about, read about, and listen to all the terrible things that “could” happen, I would likely drive myself nuts. We have to choose to make technology a blessing and not a cursing because unfortunately if we aren’t careful, fear and panic can easily set in.

Try not to let the fear of the Coronavirus consume you. Keep living the life you are hopefully already doing by good hand washing and staying home if you are sick.

Image result for 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.

Tips for Traveling with a Complex Child

Those of you following Sam’s story, may get a little bored with this post. I’ve joked several times throughout the process of figuring out how we will get Sam to Cincinnati, who travels with a complex child for fun?! I’m glad, in a sense, we’ve been “forced” to travel with Sam. Honestly, if we hadn’t, I don’t know if I would have otherwise pushed myself to navigate this uncharted territory. It’s my hope I can ease some anxiety of a mama or caregiver who will be traveling with a trached kiddo for the first time. Here it goes!

Have patience.

Start planning WAY in advance. The earlier you start planning, the better. I started planning over six months prior.

Ask lots of questions.

It’s okay to cry throughout the process.

Rely on your child’s home care nurses and respiratory therapist.

Connect with and talk to a few mamas/caregivers who have “been there, done that”.

Click here to download this SUPER helpful travel checklist from Pediatric Home Service. The first page took a lot more patience than I expected it to. I had a tough time figuring out who the pediatric medical supply company in the area was, but it was worth the diligence because they have been a HUGE help. Give yourself lots of time to slowly fill out the checklist.

Decide what supplies you will have shipped to where you are staying and what supplies you will pack. Sam’s home care nurses and I tracked his supplies for the same number of days we will be traveling a few months before our trip. This gave me general idea on how many supplies we would need for the trip. Keep in mind, your insurance will only cover your normal maximums. If you’re still reading and don’t have a complex child, we get ten to twelve boxes of medical supplies each month for Sam. Yes, we go though most of the supplies each month. That makes for a lot more extra packing when traveling with a complex child.

Connect with a general manager of where you will be we staying. Make sure they are aware you will be having medical supplies shipped there. Get a contact name you can address who the supplies will be shipped to. This will likely be foreign to them. Be very transparent. You will want the supplies to ship a day or two before you arrive.

Get a file folder to keep all of your child’s paperwork. I combined a lot, but the basics are…

Hotel/Car Info.

Cincinnati – I put all the paperwork I received from Cincinnati or will need for our hospital visits. This includes Sam’s itinerary and pre-op (Pre-Procedure Physical Exam) form

Plan of Care/Orders – Portable Oxygen Concentrator Approval, Statement of Medical Necessity, Plan of Care, Any other orders that may apply

Medications/Supplies – List of all of Sam’s medications, List of supplies which includes the supplies we will pack and the supplies that will be shipped to the hotel

History/Scope Pics – Copy of Sam’s in patient history, Cincinnati requested I bring the copies of all of Sam’s scopes

Care Team Contacts – List of contact information of anyone on Sam’s Care Team

If you are flying…

See if your airport has a program for traveling with children who have special needs. Sign up and go to this before you travel. In Minnesota, we have the Navigating MSP Program. The most useful part for me was going through security with all of Sam’s medical supplies he needs with him at all times. Keep in mind, security will open and test every liquid.

Navigating MSP Program
Kids will get a chance to go in the cockpit.
Navigating MSP Program
Sam thought it was pretty great in the cockpit.

Take all of your child’s medications with you as a carry on. We bought a backpack cooler so the meds will be easier to transport. All medications need to have their prescription labels attached.

Does your child eat by mouth? If not, ask what others have done to ease ear pain. We’re going to try EarPlanes. I’ll let you know if they worked or not for Sam.

OXYGEN…start this process very early in your trip planning! You cannot take oxygen tanks on an airplane so you will need to get a portable oxygen concentrator (POC) that is FAA approved. Depending on your child’s oxygen needs, the FAA requires 150% battery life for every one hour of flight time. For example, based on our one and a half hour flight, Sam will need three charged batteries. The POC will need to be approved forty-eight hours before you fly. Unfortunately, your insurance will likely not cover a POC, but if you’re child is on a waiver, that will. You will have to go though the process of getting the concentrator denied by your insurance before the waiver will cover it. You will not be able to fly if you do not get approval for the POC.

Call TSA Cares 72 hours before your flight to get assistance at the airport with security.

There is A LOT more I could add to this post, but these were the things that have taken up most of my time and energy. Acknowledge it’s a very overwhelming process, but don’t dwell on it. On the days you become too overwhelmed, quit for the day and try not to think about it.

If you fall upon this site and need to talk another mama/caregiver who’s “been there, done that”, please do not hesitate to reach out to me. I would be happy to answer your questions or just encourage you along the way.

We haven’t traveled with Sam yet, so stay tuned for part two of “Tips for Traveling with a Complex Child”.

Our Little Boy is Back

The culture came back and as we suspected, Sam had tracheitis…again. There were two different organisms growing. It would honestly take a microbiology lesson to truly understand some of Sam’s sickness’. Unfortunately, I’ve had a crash course in a lot of subjects I’d rather not and wasn’t planning to the last three years.

For those of you who care, I found a website that gives a good explanation of tracheitis. Keep in mind, this explanation is considering a child without a tracheostomy. It sounds pretty scary and it is, but because we already know Sam is susceptible, we can treat it quickly.

Tracheitis is an infection of the trachea (breathing tube or windpipe) that is caused by bacteria. Tracheitis most frequently occurs in small children and can make it very difficult to breathe.

Tracheitis is rare, only occurring in about 1 in 1,000,000 cases and is suspected to be more prevalent in boys than girls.

Aggressive treatment early on is important in properly managing tracheitis.

Initial treatments will usually require admission into an intensive care unit where your child can be observed and intubated (breathing tube placed) if necessary. Having a breathing tube will also allow the ICU nurses to perform aggressive airway suctioning to keep your child breathing as comfortably as possible. [1]

It’s virtually impossible for a child without a tracheostomy to get tracheitis. Why is Sam so susceptible to tracheitis? Because he has a direct access to his airway, his tracheostomy or breathing tube. We have our noses, sinuses, and the rest of our anatomy leading to our trachea to filter out the bad bacteria. When it tries to get stuck, we sneeze it back out. We have lots of natural mechanisms to fight this stuff off. Sam does not.

Sam was a pretty sick little boy this past week. Tracheitis is what Sam was hospitalized for back in September. If we would have brought him in this past week, chances are very high, he would have been admitted. We did everything possible to keep him out of the hospital, because we know he can catch far greater illnesses or what we call super bugs there than at home. We also didn’t want to disrupt any of our travel plans coming up. That would have been a big bummer. In our last stay, Sam’s Pediatric Intensivist explained how, often the parents of complex kids have a very different view of a sick kid. What a generally healthy child would be hospitalized for, a complex child is cared for at home so when they do end up in the hospital, they are very sick kiddos.

Boy, oh boy, are we thankful for our home care nurses and the other people who help out when Sam gets sick. Our home care nurses and support system are what help keep us sane.

We are so happy Sam kicked this and we were able to keep him out of the hospital. Thank you for praying for our sweet little boy.

We leave in less than a week for Cincinnati! Sam’s pulmonologist has put him on “lock down” until after we get back. This means no going school and no going to therapy. Thankfully, he’s a very easily entertained little boy.

We are praying for answers in Cincinnati so we can hopefully get rid of Sam’s tracheostomy, aka trach!

Sam

Sources:

  1. Hayes, Kristin. “Do You Know the Differences Between Croup and Tracheitis?” Verywell Health, Verywell Health, 15 Nov. 2019, http://www.verywellhealth.com/what-is-tracheitis-1192023.