Sam will have another dilation tomorrow. Yes, he’s had WAY more than five dilations, but I started the count over after his last major surgery. We are hoping and praying he won’t need as many as the first time around.
In the four plus years, Sam’s had a trach (breathing tube) and feeding tube, he hasn’t had to have a granuloma cauterized (burned off), which is pretty good. This is basically skin starting to grow where it shouldn’t. Before the dilation, he’ll have a tracheal granuloma cauterized. Typically, this can be done in the clinic, but Sam’s ENT thought it would be better for Sam under anesthesia, also knowing he could do it alongside one of Sam’s dilations. We were very thankful for this. Sam’s nurse and I were not looking forward to having to hold him down for that procedure!!
We are also thankful, Sam will get his feeding tube changed in surgery tomorrow. As I’ve said before, this is a procedure he gets done routinely every two to three months. It now takes three, sometimes four of us to hold Sam down. As soon as he sees an x-ray table now, his little body clenches me with fear. We have to literally peel him off of me, to get him on to the table. It’s a fairly quick procedure, but I’m sweating by the time it’s over. Sam’s one tough cookie, so when he’s sobbing hysterically throughout the procedure, we know it must be painful.
We are thankful to be able to knock out three procedures in one tomorrow!
We’ll take some extra prayers tomorrow for Sam’s Surgeon, ENT, and anesthesia team. Pray for a smooth and quick recovery.
I have been asked many times over the past four years, “How do you do it?!” My response is always, “I don’t know.” But, I do know.
Holy Moly! What a year! I think we could all agree we’re not sad to say goodbye to 2020. It’s been a very different year.
Yes, I said different, not difficult. Now, hold on a minute, before you get your undies all in a bundle, I’m talking about myself, not anyone else.
Covid has brought on so many big opinions, death, darkness, distance learning, and quarantining. For us though, having to quarantine is nothing new. We’ve been living a quarantine life the past four years.
We might be stuck at home, but in my house, we have food on the table every day, clean water to drink, a roof overhead, and a whole lot of love.
Others might disagree with me when I say this year has been different, not difficult. We ventured to Cincinnati to have them give us some not so uplifting news. Sam spent forty-five days in the hospital. I guess we have had some pretty scary moments, but none have had anything to do with Covid. We’ve definitely had our fair share of unfairness handed to us, and it’s not only Sam who gives us a hard time. Like I’ve mentioned before, he’s not our only hard kid. Someday I know, I’ll be able to share our other story, but for now that story will have to wait.
For now, I can tell you, Covid, distance learning, Sam, and the other story has been trying, but my joy, cannot, and has not been shaken.
This might sound cliche, but from my experience, when you fully choose to have Jesus on your side, your joy can’t be taken from you. I’m not saying you won’t have your moments. I believe Satan will try his very best, EVERY opportunity he gets to steal our joy, but he won’t be able to if we truly accept His love for us.
To me, this doesn’t mean going to church every Sunday, and it’s far from being perfect.
It’s a relationship, NOT a religion.
You get to save your Debbie Downer moments for Him. It’s a person you can cry heavy tears to as many times as you want, and you never have to feel you’re being a burden. With Him by your side, you can pick yourself up, and slap a smile on your face, even when you don’t feel like it.
He’s the one who whispers, you’ve got this. You are not alone. Keep going. Just put one foot in front of the other. One day at a time.
In the moments I don’t feel His peace, I lean on His handbook (the Bible) He gave us for wisdom, direction, and encouragement.
When I let Him fight my battles, my whole attitude and outlook on life changes. There’s hope, not despair. Love, not hate. Joy, not sorrow. Peace, not worry. Patience, not anxiety. Kindness, not meanness. Faithfulness, not unfaithfulness. Gentleness, not hardness. Having self-control, not feeling powerlessness.
It’s about a relationship, not just faith, but a true relationship. It’s letting Him be my confidant.
He gives us purpose for our pain. Those hard things we go through in life, when we allow them to, will strengthen our character, not leaving us feeling weak.
My goodness, if we can’t cling to hope, then what can we cling to?
One of my darkest moments in life has also turned out to be one of my most peace filled moments. I remember like it was yesterday.
I had been “living” in the hospital with Sam for almost three months. I woke up at something o’clock in the morning to the lights flipping on, and swift feet tapping hard on the floor. Before I could even react, the nurse was pushing the code blue button.
I had already experienced this two times before, with the second being less than twent-four hours prior. I jumped out of bed, threw on my flip flops, pushed back the curtain, and quickly stepped out of his room, knowing in a flash, there would be a flood of highly trained people rushing into Sam’s room.
I sat on a chair outside his room feeling numb, praying inside my head and thinking why is this happening again. I remember a nurse whispering to another nurse, “She doesn’t need to hear this.” They gently lead me outside the double doors of the unit and sat with me on the vinyl hospital couch in a small waiting area.
To this day, I couldn’t tell you what they were protecting me from because I didn’t hear a thing. It was as if everything around me fell completely silent. I remember the nurse who sat with me, hugged me, and told me, “Seconds feel like minutes, and minutes feel like hours.” She could not have been more accurate. I also remember begging God to keep my son alive, and telling Him in the same breath, no matter what happens, I will still serve you, but please, please keep my son alive.
The next thing I knew they were flying around the corner through the double doors with Sam, several people around his bed, and bagging him at the same time. I know I followed still praying he would be okay.
I would find out later, Sam had over ten minutes of chest compressions that night.
The craziest thing about that short story, is I still remember, I had this overwhelming peace come over me, even though I didn’t know the outcome.
I guess what I’m trying to say is, I do know how I do it. I believe in a God whose plans are good for me, even when I can’t see. I know my God is with me in the deepest valley and on the highest mountaintop.
Maybe next time I get asked the question, I can answer honestly. Boy am I thankful for His grace, because I think I already know what my answer will be.
Sam’s dilation went well. His esophagus was VERY strictured (narrow), almost shut again. The dilation was definitely needed.
As in the past, as soon as Sam gets dilated, his spitting and retching almost instantaneously stop. These are usually the tell tale signs he needs a dilation. Unfortunately, there isn’t anything else that can be done, except put him under anesthesia, and stretch his esophagus.
As of now, surgery will wait to hear from us. IF Sam gets symptoms, they will put him on the schedule as needed. With Sam’s thirty-five plus esophageal dilations, we’ve only been wrong once. There are many, but one great thing about Sam’s care team, is they trust our judgment. They listen, really listen to us. I call the surgery scheduler, who I’m on a first name basis with, and they get him on the surgery schedule ASAP.
We are going to believe Sam won’t need as many dilations as the first time, and even better, he won’t need anymore.
I’ll leave you with a moment from a day in the life of Superman Sam. You just can’t make this stuff up!
We were sitting in “school” with Sam. When Sam does distance learning, we prop his iPad on the kitchen island and he sits on one of the bar stools. I usually stand next to him. His nurse will stand or sit on the stool on the other side of him. All of the sudden, I thought I noticed something about Sam’s mouth. Does he have a missing tooth?!?! With Sam’s camera on, I didn’t want to disrupt school.
As soon as school was over, Sam’s nurse and I pried open his mouth. Yes, we had to do this. It’s the only way to be able to see inside his mouth. Yep, I saw it right the first time, a bottom, front, tooth, MIA! What?!?! Where did it go?!?! Did he swallow it?!?! Was it in his bedroom somewhere?!?!How did I not know he had a loose tooth?!?!
Mom guilt, setting in. And then, that good ole self talk. Stop it!! You have a lot more things to keep track of in the world of Sam, then a loose tooth!!! It’s not a big deal!! He’s clearly okay!!
Mom guilt. Raise your hand if you’re a mom and have had mom guilt recently. Okay, I’m feeling better already. It’s so silly. Why do we do this to ourselves? Because, we’re human.
Give yourself grace mama. To me, giving yourself grace is acknowledging the situation, doing what you can to rectify it, then moving on, and letting it go. It’s knowing, we are not perfect.
From the mama with typical children, to the mama with special needs children, to the mama of a prodigal, and everything in between, give yourself grace, because we all need it, every single day.
Sam was happy, but also nervous at times, when we left the hospital. He walked out with excitement, but would stop here and there, and clench my leg with with fear. I can’t imagine what was going through his head. That’s the thing about having a nonverbal child. I can read his emotions, but I also know there is so much more attached to those emotions and so much going on in that little brain of his. I would love to hear it all. Someday.
Overall, Sam has been doing well. His nights have been rough, but his days have been mostly good. Home care nurses, priceless. Both him and I are definitely happy to be home.
You couldn’t put a price tag on when Sam saw his Abby for the first time, in over six weeks. Let me remind you, Abby wanted nothing to do with having a little sister or brother five years ago. The bond they have now, is priceless.
Most of the time he’s happy with his spoons or forks at his favorite spot in the house, his Elmo desk. Or dancing in the living room to his toddler music.
Sam will have another esophageal dilation tomorrow. Unfortunately, for Sam, this is a routine procedure. We know the drill. I’m not saying the drill is easy, but we definitely have it down to a science. If you’ve ever had a child have surgery and remember the process, it’s quite the ordeal. When you’re asked to be on a committee to make the patient/family experience better, pre and post op (before and after surgery), you must be a be veteran. Yep, true story.
Pray everything goes well tomorrow. Pray for Sam’s surgeon, nursing staff, and anesthesiologist.
As always, Sam Strong and Faith Over Fear!
Happy Thanksgiving! Remember, you can always find something to be thankful for. Focus on what’s good in your life. I promise, there’s something.
I’m happy to report, Sam’s had two great days in a row! Sam is back to swooning all who enter the room. The rough days were due to ANOTHER infection brewing. Ugh. Darn hospitals. Thankfully, we caught and treated it quickly.
The bleeding is less. Although there is still differing of opinions on where the blood might be coming from, it’s not a huge concern right now. They are watching his hemoglobin levels, which have been overall good. If the blood continues, he will be simultaneously scoped by Pulmonology, ENT, GI, and Surgery, which we can come back for.
They have been able to control his blood pressure, with meds we can go home on, and he has been pooping. Today, for the first time in almost six weeks, he did not have any retching episodes! All good things!
The Care Conference could not have gone any better. It’s a bit emotionally overwhelming to sit in a room with several people who have played a role in saving Sam’s life the past four years. We have a good, solid plan that everyone was able to agree on. The tears were unavoidable as they thanked me for the role we’ve played at home, in caring for Sam. When they say, it takes a village, that might be an understatement when it comes to Sam.
I decided to save the best news for last. Drum roll, please. If Sam “follows the rules”, we’ll be home this weekend without the PICC line! Hallelujah!
I’m going to spare you the many details of the last few days. Sam did have his dilation, and again, it was needed. Since then, there have been new reasons to keep everyone on their toes around here. I’ve had more than a few doctors and specialists tell me, they were pretty worried yesterday.
Today was a better day. Period. End of sentence.
Pray they will be able to figure out the source of the bleeding, or let’s believe it will stop all together. Pray for Sam to poop. 💩 Pray for his blood pressure. Pray for everyone who is on Sam’s care team and that they will all be able to make it to his Care Conference they are working on setting up.
Enough about that.
Right now, I am thankful for…
…Sam having a better day.
…doctors who lose sleep over my son.
…nurses who advocate for my son.
…being able to see my daughter yesterday.
…a family who continues to support us in so many different ways.
…being able to see my husband today.
…friends, who I know I can lean on.
…Physical Therapy, Occupational Therapy, and Music Therspy in the hospital.
…the Ronald McDonald House Charity.
…all of you who continue to pray for Sam and the rest of my family.
On top of everything else going on, Sam developed a cold. Poor buddy can’t catch a break. It has been a rough few days. Who am I kidding, it’s been a rough thirty-two days. To be on the safe side, they did a nasal swab and trach culture. The only infection that showed is rhinovirus, aka, the common cold. Big deal, you might be thinking. At least that’s what I thought/think when my other kids caught/catch a cold.
For Sam, the common cold is rough. He’s miserable. We are constantly suctioning his trach (breathing tube). He retches a lot more because it’s hard for him to control all the extra secretions. He is also at a much greater risk for aspiration, pneumonia, and/or bronchitis. That’s where the hard work comes in for us. With continuous monitoring and safe suctioning, we can prevent these infections. Thankfully, he usually gets through the cold without complications, but it’s not easy.
Sam’s next dilation is scheduled for tomorrow at 2:45pm. As of now, he’s still scheduled. The doctors today, said if things get worse, he will have to get rescheduled. Pray for a quiet, restful night, for the cold to be short lived, and for him to be healthy enough for surgery.
Unfortunately, we are still suctioning blood from his trach. In the morning, ENT will do another bronchoscopy. This way, if they find anything, they can take care of it in surgery tomorrow afternoon.
On a good note, he is up to sixteen milliliters per hour with his feeds and we have not had to stop them!
Although this is hard, and trust me, I have my moments, for the most part, I am okay. Even in all this chaos, I am at peace. I truly believe, the more you lean on and trust in Him, the more you will feel an overwhelming peace even in the chaos.