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.

Let’s Get This Over With

We leave in exactly two weeks for Cincinnati and we now have a pretty sick little boy on our hands. Even though yesterday his symptoms weren’t so bad, his pulmonologist decided to go up on all his nebs, start his antibiotic neb and have us do a trach culture. I was hoping we could wait till Monday to do the culture, mostly for selfish reasons because I have to drive the specimen to Minneapolis. Yesterday, his symptoms didn’t seem to merit a two hour trip there and back, so I thought…

The little boy who was running around yesterday morning, barfing here and there, but happy as could be, has barely moved off the couch today and is currently on oxygen to help keep him comfortable.Poor buddy.

Poor buddy.

I’m so glad we didn’t wait to do a trach culture. The results take seventy-two hours so we are hoping to stay out of the hospital and come up with a plan on Monday. Or even better, Sam kicks this thing before then.

Okay, so let’s pray he kicks whatever this is! He needs to be healthy before we go to Cincinnati. He will be put under two of the days we are there and if he doesn’t clear his pre-op appointment, our trip to Cincinnati will be postponed. Nope, not happening.

Sam went for almost two whole months symptom free! That’s pretty good for Sam in the winter! Let’s get this over with, little buddy. You’ve got this!

I believe in the power of prayer. Even if you don’t, if you would throw one out there for my sweet, little boy, we would greatly appreciate it.

As always…

…Sam Strong

and…

…Faith Over Fear!

We want this guy back!
We want this guy back!

This guy.

Why Target?

Target.

I don’t know what it is about Target.

Every time I go to Target alone, I get super emotional. There are moments my body seems to freeze up and time feels as though it is standing still. I walk by the sweet mamas talking to their sweet babies while their cute little legs are dangling out of the cart. My heart is happy for them and hurts at the same time. I think about how grateful I am I was able to take my first three sweet babies to Target. Sam has never been to Target or in any store for that matter. Or I go to the baby food section and the only thing I buy is green beans. I don’t buy anything else because the only thing, besides formula, we pump into Sam’s gj-tube (feeding tube) is green beans. For a moment, I envy the other mamas who are buying other baby food flavors. Stupid, I know. Then I tell myself to buck up and feel grateful for nurses and feeding tubes and life.

Suddenly, it hits me.

I figured it out.

PTSD. Post-traumatic stress disorder.

Yep, kind of weird, I know, but it’s a thing and it can happen to anyone who’s been through a trauma.

When Sam was “living” in the hospital, I basically lived there too. On the rare occasion I did leave, it was to be with my family or quickly pick-up some toiletries. We lived in twelve different rooms in the seven months Sam was there so I learned to live very sparingly. Guess what store I went to on my rare trips out of the hospital? Yep…you guessed it…Target.

I vividly remember standing in the checkout line at the Target closest to the hospital during an extremely grim time for Sam. I felt like I was the scene in a movie. I looked at the person in front of me, behind me, and everywhere around me wondering what their story was. An overarching question constantly on my mind still to this day…“What’s their story?” I remember failing to fight back tears as I stood in line. I quickly wiped away the small tears as I came closer to the checkout. It didn’t help there was a proud daddy with his little boy who couldn’t have been more than a year old in front of me.

It’s crazy how sounds, smells, and/or certain places can bring back vivid moments in your life. Whether they were moments of peace or fear, they were real to you. It’s those moments of fear that seem to hit us the hardest. Fear can wrap around you so tightly, it can almost feel hard to breath. It can happen even if you haven’t experienced a trauma. I’m guessing we have all had moments like this. When you can stand in faith and know fear is a liar, your happiness can’t be taken. That grip of fear slowly releases and a peace that passes all understanding sets in.

Still almost three years later, I have to fight with myself anytime I step foot in a Target alone. Some days there is more fighting than others, but every time I walk out those sliding glass doors, I choose to smile, remind myself, it could be so much worse, and ponder the MANY things I am grateful for.

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