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.

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!

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.