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.

Cincinnati?!?!?!

Bam! Pow! Zap! That’s how the appointment felt. I know things could be so much worse, but it felt like a sucker punch right in the gut. I have no idea what a sucker punch to the gut feels like, but at that moment, I think I did. She could not have given the news in a more kind, respectful way, but it wasn’t what I was expecting. It was evident by her demeanor from the time she walked into the room she was was uncomfortable. It wasn’t long before it was clear why she was uncomfortable. She was the one picked to share the not so great news. She asked what my goals were for Sam. In every other word, I told her I wanted to get rid of the trach. It feels a bit foggy after that. All I know is she said they were all scratching at the edge of their boxes. They (Sam’s care team) have some things they could try, but they are very risky, and wouldn’t want something to happen to Sam and then regret they hadn’t referred him to Cincinnati. Collectively, all of Sam’s doctors have decided because of his continued complexity, they are not what’s best for him. They referred him to Cincinnati Children’s Hospital’s Areodigestive & Esophageal Center.

Although it felt like a shock, it shouldn’t have been. It’s a subject that’s been danced around since Sam was two and a half months old. And since March, it’s been really danced around. I think we were just in denial. We have so much faith and trust in his doctors here.

Here is a post I started writing before summer started, but didn’t finish…

Sophisticated can be defined as complex or intricate, as a system, process, piece of machinery,  or the like. Quite fitting for Sam. It’s not the first time, doctors have no clue or haven’t heard of some of Sam’s diagnoses. It is the first time though his doctors are not quite sure what to do.

After discussing with gastroenterologists and surgeons nationally, Sam’s docs have come up with a plan. And thankfully, after some discussions, it doesn’t involve going to a hospital out of state. Let’s just say Sam is a rare case. In all reality he has been since the the beginning. He continues to be quite medically complex, but despite his complexities, for the most part, he’s thriving!

Sam had his 23nd and 24th, if I’ve counted correctly, esophageal dilations in the last couple of months. Once again, he made general anesthesia look easy and recovered very quickly both times. It was a little easier to hand him over to surgery the past two times as he got something to help him feel relaxed and sleepy before they poked and prodded at him. Like I said before, as Sam gets older things get harder for him and, in turn, us. He’s starting to remember what happens to him when we go certain parts of the hospital.

Here’s a short story on him getting smarter…

Because Sam doesn’t eat or drink anything by mouth, there’s a bit of a rush to get a new feeding tube in if it comes out unexpectedly. He’s a very busy boy and despite our efforts to to rig ways to keep the tube in, inevitably it gets pulled out once in a while. It doesn’t help he eats fourteen of the twenty-four hours in a day. Backstory…he goes to radiology to get his feeding tube changed every two to three months. He’s had this type of feeding tube for almost two years and it’s always gone fairly smooth when we get it changed. As soon as we walked into the radiology room, Sam instantly became agitated. One thing we’ve all learned about Sam is unless something is really wrong, he doesn’t get upset. It wasn’t long before we figured out what the problem was. He knew exactly what was about to happen to him. I can’t imagine a six inch tube pushed into your stomach and then through your small intestines feels real hot. Poor buddy. Every procedure gets a little tougher as he gets older, but overall, he’s a trooper.

We will be taking a little trip to Mayo where Sam will have a special test (esophageal manometry) done to determine how well his esophagus works. Pediatric esophageal manometries are not done very many places and it’s a relatively new test done at Mayo for a pediatric patient who doesn’t eat or drink by mouth. We are just happy to be able to stay in Minnesota. Depending on the motility of Sam’s esophagus, will determine which surgery will be best for Sam. Either way, something needs to be done as they cannot continue to stretch his esophagus every month. This creates retching and retching means the trach can’t come out. In short, in order for Sam to get rid of his trach, which we all thought would be long gone by now, all of his tummy stuff needs to be fixed first. As Sam’s doctors would say, Sam is complex. He’s never been an easy fix, but they continue to search for answers and we couldn’t ask for a better, more dedicated team.

Sam will have another dilation in July. Continue to keep him and the rest of us in your prayers.

Again, although Sam is a full-time job and then some, he’s doing very well. He’s making some sounds and knows about 15-20 signs. His newest sign is “outside”. Before, he would grab my hand, pull me to the gate, and want me to hold him. I’d pick him up and then he would wiggle his little body to motion me more towards the gate while also getting mad. Or he would just keep pushing me into the gate. We’ve been working on the sign for outside. The other day, he did his thing where he pulls me to the gate, but this time, signed “outside”! We were pretty excited! I wasn’t going to take him outside, but who could resist that?!

To make a VERY long story short, since March, Sam has had four more esophageal dilations, which I think makes twenty-five. As always, he recovered beautifully from all of them. He also took a trip to the Mayo Clinic. He did not end up having the esophageal manometry done there. Although Mayo is an amazing place, it’s not the best place for Sam. He’s a rare case and his doctors want to him to see the best of the best, which for him, is Cincinnati Children’s.

Since the news about a month ago now, I’ve been able to change my thinking from, we HAVE to go to Cincinnati to we GET to go to Cincinnati. Let me tell you, A LOT of negative thoughts were running through my head when I was hashing it out to the big man upstairs. How in the world are we going to get him there?! We’ve never been overnight with him unless it’s the hospital. What if we have to be there for a long time? I don’t want to split my family up again. How is this going to work financially?! Had I of known, I would have saved the money we used to build a deck and used it for Cincinnati instead. What if we go all the way there and they can’t fix him? 

These are all legitimate concerns I still have and there are many more, but since I’ve changed my thinking from we HAVE to go, to we GET to go, and let go and let God, I’m much more at peace with it. My plans are not His and although that can be hard sometimes, my life is a lot less stressful when I can truly accept that. I will always bank on that, although Sam is complicated, he is here.

We have started the process with Cincinnati, but don’t have any details. Again, we will wait, which according to Dr. Seuss is the most useless place. Yes, I agree, waiting is useless so that’s why I choose not to dwell on it. I choose not to wait, but to enjoy the moments I am in right now, like…

…Sam’s doctors okaying him to start school next week.

…being home and able to send my kids off to their first day of school.

…getting rained on the entire kayaking trip we took for the first time.

…going to the great MN get together.

…taking Sam swimming. Shhhhh, don’t tell his docs.

…having a lemonade stand to raise money for Ronald McDonald House Charities.Lemonade Stand

…going strawberry picking.

…being a part of my sister-in-law’s beautiful wedding.

That is what life is all about.

 

 

 

3rd Annual Ronald McDonald House Walk

“This is the house that opens its arms, that feels like home, that embraces the children, that comforts the parents. This is the house where families meet, to eat and sleep, to find their strengths and dry their tears, to look forward with hope to better years.”

I never knew the impact of Ronald McDonald House (RMH) Charities until life threw a curve ball at my family. If you don’t already know, RMH Charities provides a home-away-from-home to keep families close during a child’s serious illness. For over seven months, they did just that, and more for my family. Please consider donating or walking with us.

Click here for more information on donating and/or walking. 

download

Happy Birthday!!!

Happy 3rd birthday to my sweet, miracle boy! Many didn’t think you would make it home. Although you are still very medical, you are thriving. Hospital staff continue to be amazed at your progress. Thank you for the joy you bring into my life and so many others. Thank you for reminding me daily how precious life is. Thank you for being so strong for all your little body has endured. Thank you for inspiring me to do better every day.

To the medical professionals who didn’t think Sam would make it home from the hospital. Thank you for doing everything you could to keep him alive. Thank you for losing sleep over my little boy. Thank you for talking with us, not at us. Thank you for looking at Sam as an individual and not just a little boy with Down Syndrome.

To the family and friends who continue to stick by us. We couldn’t do this journey without you. Your prayers and continued direct support are a constant reminder of the good in a chaotic world. We are where we are mentally, physically, financially, and emotionally because of people like you.

To our Heavenly Father. It’s because of your love I make it through each day with a smile on my face, even when it’s hard. Thank you for promising to stay with me in the storm. Thank you for giving me a heart of gratitude or a glass half full mentality, no matter the situation, even though I know it sometimes annoys people a little. Thank you for your grace and mercy.

I joke my life seems to have a timeline, BS (Before Sam) and AS (After Sam). Ironic, I know. My friends and I have had some good laughs over that one. It’s weird how life can seem to stand still and fly by at the same time. These last three years have been the longest, shortest years of my life, if that makes any sense at all. We don’t always get to choose what happens to us, but we do get to choose how we deal with the cards we are dealt. Shortly before we knew Sam would come into our life, I bought this sign for our house. When Life Gives You Lemons Make LemonadeI’d be lying if I told you I haven’t had tears streaming down my face, while looking up at that small decor in our home. That silly little sign has given me hope on days that felt hopeless. No matter what you are going through, I hope you can make some lemonade out of lemons. All you need is a little sugar.