You can always sing in the storm.
You can always figuratively put one foot in front of the other.
They are both a choice.
Will you choose both today?
You can always sing in the storm.
You can always figuratively put one foot in front of the other.
They are both a choice.
Will you choose both today?
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.
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.
FAITH OVER FEAR!
About two weeks ago, I did my usual run to the pharmacy to pick up Sam’s meds. We had been running low on hand sanitizer, which is a staple in our house so I figured I would pick some up.
I ventured over to the aisle where I knew I would find the hand sanitizer. As I turned the corner, I noticed empty shelves. You guessed it. There was absolutely no hand sanitizer. That’s silly, I thought to myself, I guess I’ll get it at Walmart. The shelves were completely empty there too. For real?! This can’t be a result of people freaking out about the Coronavirus?! I’ll try Amazon. Nope. I’m not paying that kind of money for a six fluid ounce bottle!!
This is a true story. It’s hard for me to understand. As you are probably aware, there are many other things flying off the shelves besides hand sanitizer. Being precautionary is one thing, but wiping out stores tells me fear and panic are involved.
We are now on our last bottle of hand sanitizer and I still haven’t been able to find any. I’m not going to bend over backwards to find it and I’m not going to pay a pretty penny for it. We have kind people in our life who know how important hand sanitizer is in our house and have bought some for us.
People are living in fear. Fear of what might or could or might not happen. Being precautionary is one thing, panic is another.
We have a medically fragile son. How many are feeling and reacting to the Coronavirus, we could feel and react the same way each and every day. This is the reality of anyone who has a medically complex child. Every single day, germs are very BIG deal in our house.
We choose not to live in fear. We do our best, but that’s all we have. We take precautions, but don’t let the weight of what the germs “could” do to Sam consume our minds. We continue to wash our hands and say our prayers because Jesus and germs are everywhere. I try focus more on the Jesus side of things because I believe His plan is bigger.
Worry is a thief of joy. The more you dwell on your worry, the more and more tangible it becomes. A worry can’t change anything. It is just that, a worry. It’s our mind dwelling on the maybe. I have two things in my life right now that are legit things I could worry about. If I sat and thought about, continually talked about, read about, and listen to all the terrible things that “could” happen, I would likely drive myself nuts. We have to choose to make technology a blessing and not a cursing because unfortunately if we aren’t careful, fear and panic can easily set in.
Try not to let the fear of the Coronavirus consume you. Keep living the life you are hopefully already doing by good hand washing and staying home if you are sick.
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.
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.
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.
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.
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.
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!
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…
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.
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”.
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. 
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!
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.
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.
…Faith Over Fear!