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.
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.
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 was pretty much back to himself on Monday. When he gets sick, he falls hard, very fast, but he comes back just as fast. Darn tracheitis.
One of Sam’s nurses who was new to us in March has never seen Sam sick. She was here the day he started to get sick. He fell hard, fast. We had a very rough day. She’s heard me forewarn her how fast it happens with him, but when she experienced it, she couldn’t believe the actuality of it. She said she went home and cried. Enough said.
He’s better. That’s all that matters.
We are all set! Surgery is already rescheduled for September!
I am bummed we will be gone during the first week of school. If we were living in normal times with school, it would be good timing, but we’re not.
Distance learning was not a super great experience in our house, but we made the best of it. It makes me a little nervous to have the “teacher” gone the first week of school, but it will be fine. According to my daughter, the teacher (aka, me) isn’t top notch anyway. 😂
The flights, hotel, and car rental are booked again and the oxygen is approved. Thankfully, all of the medical supplies that were already shipped to the hotel can just wait a little longer. The hotel general manager had no problem keeping the extra boxes for us. Whew. This traveling thing with Sam is no cake walk, but it does get easier every time.
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 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 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.
I need a haircut.
Yeah, I look pretty cute.
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.
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.
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.
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.
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.