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)

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.

 

 

 

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.

Cincinnati Bound

It’s official.

We will be going to Cincinnati Children’s in February. The first trip will be a series of back to back appointments and scopes. The team of doctors have gathered what they know about Sam’s history from his doctors here. Once they gather the information from our first trip, the doctors will meet again and formulate a plan for Sam. We are hoping and praying some of the plan will be able to be carried out by our doctors here. Bottom line, let’s hope they can figure out a way to get rid of Sam’s trach (breathing tube), which would be a definite game changer for Sam and our family.

Since the referral process started back in August, I have been doing my homework figuring out how we will get Sam to Cincinnati. FAA has SO many regulations. And flying with a complex child gets you no free passes. If anything, it’s the opposite. It’s been an interesting and sometimes frustrating process with a few tears shed. Okay, more than a few. I was surprised by one particular phone call I made to the airline we are flying. It was a specific number to call if you are flying with a person who has disabilities. Seems like the right number to call, right? Let’s just say, the person on the other end was not helpful and insinuated we fly first class. Yes, that was a call that ended in tears. Half the time, when I call places to ask questions, they have no idea what I’m talking about, which is not abnormal when it comes to Sam. The other day the gal who handles Sam from our insurance company told me, most of the things that have come up with Sam, we’ve never seen before so we’ve had to make it up as we go. Side note. Thank you Lord for insurance!

I’ve dived into ALL of the resources I can. I was able to connect with another mom whose daughter was trached and they traveled with her. She reassured me, there will be hiccups along the way and I will probably be sweating profusely by the time we board, but it sounds like I’m on the right track and asking the right questions. It felt good to talk to someone who’s been there. The trach mama world can be an isolating feeling. Although I have some pretty amazing friends who might not “get it” and really don’t try to, but are really good listeners.

The plane tickets are bought, the hotel is booked, and the car is rented!

The rest will get figured out with a lot of help from Sam’s respiratory therapist, nurses, and many others. So thankful for all the help!

Sam has been very healthy for the past month. Sean (my husband) would tell that’s because he hadn’t been in school. Maybe, but he LOVES school and until his docs tell us to pull him, I’ll keep sending him. Praying Sam will stay healthy until Cincinnati and will get to stay in school.

Best Christmas E…v…er!

Well, I’m overwhelmed again and it’s not because things aren’t going well. Again, it’s the opposite.

We were shocked and surprised when our friends showed up at our door the week before Christmas with gifts…so…many…gifts. I tried to ask what was going on and everyone just ignored me. Then, strangers started to follow with even more wrapped presents! The presents kept coming and everyone kept ignoring me! After the gifts were literally overflowing in our living room one of the strangers with the sweetest, kindest smile began to talk. I don’t remember much of what she said. I remember hearing, We are here with the Vikings and the Best Christmas Ever and your friends nominated you...

I don’t know if I was sobbing before or after that, I just know the tears were flowing off and on A LOT that night.

The sweet gal from the Vikings had our friend read what she wrote to nominate our family for the Best Christmas Ever. You know when the tears are falling so fast down your cheeks, you can barely catch the next one? Yeah, that was me during that little reading. I just kept thinking, we do not deserve all of this. Yeah, I still feel that way, especially after all we’ve been blessed with in the last few months.

We were given SO MUCH stuff, from a trip for our family to anywhere warm to Sesame Street pjs for Sam. Things we could easily do without, but those things put some pretty big, heart felt smiles on my kids faces. Okay, okay ours too. I got a KitchenAid mixer, something I’ve always wanted, but either couldn’t or just didn’t feel right about buying in the past.

We have been beyond blessed by our family, friends, and strangers the past three years, but this year has been over the top.

Honestly, I’m still in shock and it all feels so undeserving. I get a lump in my throat each time I think about the whole thing. Why us?

I guess I tell myself it wasn’t for me, or Sean, or Sam. The Best Christmas Ever was for Ryan, Will, and Abby. You see, when you have a complex child, everything revolves around that child. If you haven’t seen the movie Wonder, I would highly recommend it. The way it depicts each member of the family with a complex child is spot on. The sister of the boy who is medically complex in the movie says, “August is the Sun. Me and Mom and Dad are the planets orbiting the Sun.” Although she deeply loves her brother, she feels left out sometimes. I could write a book about the mom guilt feelings I have with my other three kids since Sam has been born.

It really is incredible what can happen when people use their pain to help others. Click here to learn more about the Best Christmas Ever and read the story about this amazing dad who decided to pay it forward year after year to families who have been dealt a tough hand at no fault of their own. We were blessed this Christmas because one person tried. And we weren’t the only ones blessed, all that partook were uplifted. We can’t thank all involved enough. Sometimes, thank you doesn’t do justice. At the end of the day, it’s my hope, my kids will see His work in all of this.