Another Dilation

On Monday night we strolled Sam down to surgery again. They discovered his esophagus had narrowed down quite a bit since the last dilation done, only about a week prior. It wasn’t as strictured as the the first time, but enough to have it difficult for things to pass through. They dilated again.

He rested overnight and started feeds the next day. He’s on day two of feeds. The feeds were going well, up until later this evening. We decided not go up on his feeds at the designated time, and try keep them running at the slow rate they are. He’s sleeping well now, without any symptoms. Let’s hope, pray, and believe he can continue to go up on feeds without having to stop them.

Sam’s Surgeon has decided to schedule another endoscopy for early next week. He will take a look and dilate his esophagus again if needed. For whatever reason, Sam’s esophagus thinks it needs to close up post surgeries. We may have to continue this process, which is not new to Sam, but not fun for him either. Pray his esophagus stays open and will need minimal dilations.

Home. I’ve decided not to bring it up anymore. Sam has a great team, who has his best interest at heart. Home will happen when it’s best for Sam.

Faith Over Fear!

Sam Strong!

Superman Sam Update

For most part, we’ve been able to manage Sam’s pain. When the morphine wears off, he’s not a happy camper. The Intensivist went up a little on his morphine today, but he’s not quite to the full dose. Pray we can go down, not up.

He had another good night until they had to put a permanent cath in him because he went for a second time without peeing. Bummer, but not the end of the world. The rest of his night was good.

We tried yesterday and today to wean him off the oxygen, but that didn’t go so well. We’ll try again tomorrow. Because of Sam’s pain, he’s been on scheduled morphine, which can mess with oxygen levels and the bladder.

Sam had a very major surgery on Wednesday. All of what’s happening is not out of the norm. Although, it’s not fun to watch, all of the docs are happy with what they are seeing so far.

We are not out of the water for leaking. Keep praying for no leaking.

Sam Strong!

Faith Over Fear!

Overall, Things Are Good

Sam had a pretty good night.

He hasn’t been awake too much today, but when he is, he’s pretty ticked off. Pray for pain management.

From a surgical and PICU standpoint, things look good.

He hasn’t peed yet so we’ll take prayers for that.

Continued prayers for no leaking.

It’s so hard watching him have to go through all of this. My goodness, this little guy is so strong!

Faith Over Fear!

Sam Strong!

One Hurdle Cleared

THANK YOU for all your prayers! After over a SEVEN hour long operation, everything went a-okay.

Exhausting. It’s like you hold your breath for seven hours. Exhale.

And now for the next hurdle…recovery. The next few days will be an even bigger hurdle to jump.

Remember to breathe.

Please pray for no post-operation complications, specifically, no leaking.

Faith Over Fear!

Sam Strong!

We’re home, but…

…there are more curve balls.

Overall, Sam is doing good. We are both happy to be home. There was a day when the hospital felt like home to Sam and almost for me, but that feels like a very long time ago. Thankfully we were only there for one night.

One thing I’ve learned living in this small world of a mentally complex child for the past four years is, when there’s more than one type of doctor in your child‘s room giving you news, it’s probably not going to be good.

And it wasn’t.

The hospitalist, a pulmonologist, Sam’s gastroenterologist, and his main surgeon were in the room. Let’s just say the hospitalist was not a young buck. She had clearly been practicing medicine for a very long time. When the conversation was over, and she said, “Wow, I’ve learned A LOT today!”, I didn’t know whether to laugh or cry. I laughed, of course.

Sam did not need a dilation. There was a much bigger problem found. Basically, Sam’s stomach is in his esophagus and the rest of his gastrointestinal organs are pushing up into his chest. Sam’s gastroenterologist was able to fix the problem temporarily using the scope.

He won’t be able to have his airway surgery in Cincinnati yet. We have A LOT to figure out between Sam’s doctors here and Cincinnati.

We are hoping the temporary fix will stay until we decide what the next best steps for Sam will be.

Don’t worry, as always, Sam will knock this curve ball out of the park! Making it to first base will just fine too.

Sam Strong!

Faith Over Fear!

There’s no place like home.

The Abbreviated Version

It isn’t until I see Sam’s story on paper or I’m asked to share it at a volunteer event, I think, Holy Smokes!!

I shared my “What Will You Remember” post with one of Sam’s nurses he had while “living” in the hospital.

Her: Oh my gosh!!!! We were out on a boat today and I literally was thinking about Sam! I honestly CAN NOT believe it was 4 years ago!

Her: He changed my life!

Her: That post made me bawl 😭😭😭 so perfectly said! You have all been through SO much.

Me: I don’t even realize it until I write about it!

Her: And that is truly the abbreviated version. Insane.

That hit me hard. The abbreviated version. Wow. So true. Crazy. 

Here’s the thing.

I don’t want discount Sam’s story and I know it’s significant. I know it’s a big one.

I also know so many have been through so much more and it could be so much worse.

Side note, never tell anyone else when they’re going through a rough patch, it could be worse. That’s a whole other topic.

It’s completely different when it’s coming from the person experiencing the tough time. I believe when your having a “poor me” moment, because we all have them at times, acknowledging others are going through or have been through worse, is not a bad thing.

Sometimes it’s not even a “poor me” moment. It’s truly a crisis situation.

Either way, it’s important we don’t stay at the pity party for too long. Pity turns into wallow and self loathing. Then we’re in trouble. When we’re here, it’s a lot harder to be there for the other people in our lives because we’re focused solely on our self.

Having a moment is okay, but staying there isn’t good for anyone.

For me, acknowledging “it could be worse“ helps me see the bigger picture and focus on the things I am grateful for. It quickly gets me out of the party no one wants to be at for very long.

It’s that self talk that says…

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Sam Update

It’s been a while since I’ve shared the latest on Sam. No news is good news, right? Pretty much.

It may also have something to do with distance learning, which kicked my behind. I am very glad school is out for the summer in our house. There may have been more yelling matches and apologies needed than I am proud to admit.

Sam was also able to do distance learning, which was the highlight of our days to watch. His face would light up as soon as the camera started. He thinks it’s pretty great to watch himself, and loved seeing his teacher, paras, and classmates. Our hearts melted every time.

Sam’s teacher, therapists, and paras had an end of the year virtual graduation for each child individually. His teacher dropped off a package about a week prior and had asked us to wait to open it until the graduation. Everyone talked about all the things they loved about Sam, he opened his gift and it ended with a video of pictures of Sam throughout the school year. The tears were literally streaming down my face.

This kid who isn’t suppose to be here…absolutely thriving.

Besides a few bumps, Sam has been very healthy and continues to put smiles on everyone’s faces.

As you know, I like to pull the perks in crummy situations. Most of us could agree being stuck at home wasn’t what we would choose, but there was good that came of it for us.

When Sam has just one appointment, it’s usually at least a four hour ordeal if not more. We try our best to group some appointments together in one day for less trips overall.

While quarantined, we were able to schedule Sam’s appointments virtually, which has been a huge blessing for us. An hour versus four or more out of your day is much better if you ask me and Sam is a very busy guy when it comes to doctor appointments.

One virtual appointment did lead Sam to needing an ultrasound in the near future. Unfortunately, it’s looking likely there was a complication of the surgery he had last fall, which may lead him to another surgery. Praying against yet another surgery for this guy.

Sam’s ophthalmologist wanted to see him in the clinic before his normal six month check up. Since January, he’s been closing his right eye when he is focusing on something. We thought maybe his nearsightedness had gotten worse. We were wrong. I’m not gonna lie, the thought of Sam having glasses made me a little excited. You can’t tell me, he wouldn’t be adorable. Am I right?!

The reason Sam has been closing his right eye is because his lazy eye has gotten worse. For right now, he has to wear a patch alternating eyes for an hour a day. Sam’s nurse and I practically laughed when we walked out of the clinic. There no way he’s going to tolerate that! Wrong again!

He’s been a rock star at wearing his patch. Coincidentally, his buddy next door has to wear a patch too. This definitely helps! And they couldn’t be any cuter.

Sam and Declan
We are the patch buddies.

Sam was finally able to get a haircut! We are always amazed at how fast his hair grows. I’ve lost track of how many haircuts he’s had. We are thankful we have someone who comes to our house to cut his hair.

Right now, Sam’s focus are his GI issues, which have always been a work in progress for him. The latest thing we’ve tried has been working successfully for almost a week. We’re praying this stays that way. 

Cincinnati…

Obviously with Covid, we had to put the brakes on our trips, which is not such a bad thing. Yes, we want to get rid of Sam’s trach and it holds us back from things, but overall he has a good quality of life so pumping the brakes is okay. More importantly, Sam has been healthy the past few months and we are grateful for that.

We received a phone call about three weeks ago from Cincinnati, they will be calling in June or July to schedule Sam’s next surgery. My guess is our next big trip will be in the fall.

That’s all for now folks!

Thanks for staying Sam Strong even in the midst of all the chaos in our world.

 

 

 

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.