Singing in the Storm

With all the craziness happening in the world, I thought it would be a good idea to bring out the perks because that is what I do when things get tough and let me tell you, we know tough times. Any parent who’s had to watch their child fight for their life knows tough times.

Thinking back, there are countless times I begged God to keep our son alive, promising Him, no matter the outcome I would still serve Him. I’ve witnessed my son go into cardiac arrest four times needing more than ten minutes of chest compressions on one occasion. In his short life he’s had several major surgeries and has been sedated well over fifty times. His life depends on a breathing tube and one hundred percent of his nutrition is through a feeding tube. We’ve gone from a two income family to one. And that’s only piece of the story.

While everyone seems to be panicking, I can honestly say, besides seeing empty shelves at the grocery store, and we’re hunkering down more than normal, our lives have not changed all that much. We are use to being “stuck” at home. When it comes to Sam, we don’t go into crowded areas very often and when we do, we are vigorously washing hands and using hand sanitizer. I go to bed at night praying God will protect Sam from any germs he came in contact with.

In our normal, everyday life, we don’t ignore what’s tough, but we don’t dwell on it either. We do our best and know there is so much we don’t have control over.

We know one tiny germ can be life threatening for Sam. Everyday we get with our sweet little boy is a blessing we know cannot be taken for granted.

Sam falls in the high risk category for COVID-19, just like he does the flu. Before everything was shutting down, he had been pulled from school because influenza had been going around. After so many confirmed cases of influenza, Sam’s doctors know the risks outweigh the benefits of school for him.

The Coronavirus has changed life for almost everyone in some way shape or form. If you have anyone in your life who is over the age of sixty-five, they fall into the high risk category for COVID-19.

That being said, for those of you who might be letting fear creep in, with what’s going on, here are some ways we keep normalcy in our lives.

  • Pull out the perks. Yeah, we were pretty bummed to find out Sam’s trach will not be coming out anytime soon, if ever, but that trach is what has given him life. Sometimes it’s hard to pull out the perks, but everyday, try to pull out at least one perk.
  • Be responsible and do your part by following the Center for Disease Control and Prevention (CDC), where you will find the most accurate information, but don’t let it consume you. If you watch the news a lot and your feeling anxious about what’s happening, take a break from it for a few days. You can follow what’s happening without watching the news by going to the CDC website. I’m not on social media, but from what I’ve heard, you might think about taking a break from that for a bit too.
  • Laugh even when it’s hard.
  • Take one day at a time. I’ve lost track of how many times our days have taken a completely different path than what we had planned since Sam. We make our plans, knowing they could be altered. Keeping this mindset has helped us be adaptable and flexible with whatever changes need to be made.
  • Call someone you know will lift your spirits. It’s important to note, I didn’t say text.
  • Let go of what and who you cannot control, which is pretty much everything, and for sure everyone, except for you and your actions. I’ve learned as soon as I start to worry about something, I try control the situation, which I generally regret doing, and it often seems to make things worse.
  • Sing in the storm. For those of you who have followed Sam’s story, you have probably learned my faith has played a vital role in keeping a smile on my face. Along with my faith, comes the music I listen to that sometimes bring on heavy tears that needed to fall and then a hope that gets restored. Sing in the storm, knowing the storm might bring wreckage, but the sun will eventually come out. Raise a Hallelujah

I pray God will give you His peace that passes all understanding as you navigate through the unknown. I pray you can focus on what’s good, and be mindful of, but not dwell on the bad. I pray you are doing your part to slow the spread without panicking and letting go of what and who you can’t control.

You’ve got this!

To those of you who believe, I leave you with a profound statement I heard about two years ago.

You can worry or trust God, but you can’t do both.

FAITH OVER FEAR!

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.

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.

Overwhelmed

This past week was incredibly overwhelming and it wasn’t because things were bad. It was the exact opposite.

Our family and friends have had two benefits to raise money for our travel expenses to and from Cincinnati. People we don’t even know donated silent auction items or gave money to our family. Wow. I didn’t know that many people liked us. Lol.

I knew these events were happening, but I kept pretending they wouldn’t come to pass. They did. I even tried to say, “Thank you, but no thank you.” All I could think is, we don’t deserve this. There might be a lot of crud going on in our world, but I continue to be amazed at the good in people, not only now, but the past three years. I still don’t feel like we deserve any of this, but can tell you, a heavy financial weight has been definitely lifted off of our shoulders. Now, we can focus on how we will get Sam to Cincinnati logistically, not financially.

The other day, I made a huge deposit into an account I set up in Sam’s name. I stood there while the bank teller counted the money and fought back tears. I bit my bottom lip, a subconscious thing I do when I am trying to get my mind on something else. When the teller got to the checks, I did my best to wipe the tears away without anyone noticing. This is silly, I told myself, pull yourself together. Per policy, another bank teller came over to double check the checks. It was all over after that. The floodgates came. I literally sobbed like a baby. So embarrassing. My heart was so overwhelmed, I couldn’t control the tears no matter how much I tried. The teller was so sweet, sincerely asking if I was okay. I reassured her, my tears were happy tears.

If you had any part of any of these events, thank you. Our hearts are so overwhelmed with gratitude, we can barely contain it.

Sean and I came home and both agreed, the two days felt like a surgery day, which means complete exhaustion. It felt like the thoughts that linger after your wedding day. Did we acknowledge and thank everyone who came? Oh, no I didn’t even know that person was there?! Off and on, I keep having to stop the tears from coming, but again, they are happy tears.

Especially now, in a world where we are always “busy”, giving your time is a gift that doesn’t go unnoticed by the receiver. In my opinion, time is the greatest gift you can give someone. I know the time and planning that went into each of the two events on behalf of Sam was a lot. Something like that doesn’t just happen. The monetary gifts given to our family the past couple of weeks would not have been made if people did not give their time. At the end of the day, people gave their gift of time and that is worth just as much.

THANK YOU to anyone who helped in any way whether with your time or your financial contribution. Words truly cannot express our gratitude.

We found out our first travel dates to Cincinnati! We will be going at the end of February!

Sam Strong!

Cincinnati here we come!