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 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 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.
Sam’s PICC line took an hour to an hour and half to put in. They highly suggest parents are not in the room for this. Good suggestion. I don’t leave his room much. It’s a lot harder to leave now that he’s older. I know I didn’t leave a lot when we were “living” here, but I felt more comfortable leaving back then. Thankfully, this place is not home to him anymore. Now he gets so afraid, as he should. Most of these people, although great, are strangers to him.
I decided to stroll down to the third floor, where RMH is. I walk through “the house” and start recollecting. I notice some of the changes. I see it’s a beautiful Minnesota fall day so I step out onto the patio. I’m sure my body is screaming for vitamin D at this point.
As I sit on this small patio (picture above is the view from the Minneapolis RMH Campus), the memories of this place come flooding back to me. The sounds of the city going on with its day. Once in a while, a helicopter blares above or the sirens of an ambulance race by. I close my eyes and let the warm sun beat on my face. It feels good. The memories of the beginning of Sam’s life imbedded in my heart, good and bad, begin vividly racing in my mind.
There are so many memories, and some create an extra pang in my heart. I am beyond grateful for this charity. It’s one of those things, you don’t really understand the impact of what they do, until you or someone close to you gets thrown into a situation they never thought possible.
During our extended stay, RMH was a game changer for me. For over seven months, I had a free home cooked meal, a bed when I asked for one, a friendly smile to greet me each time I walked in, a place to get away for a moment without the feeling of being in a hospital, and a nice, warm shower, when it was often well overdue.
As I rarely left the hospital, having this, home away from home, only a few steps away from Sam, made an incredibly difficult time easier, both financially and emotionally.
Some of my most emotional moments were spent at RMH, like sitting, in the warm sun, on the balcony of RMH. Or when I saw my mom, dad, and sister for the first time after they had jumped in their car from Florida on a Thursday afternoon, and made it to Minnesota by a Saturday evening. Grandpa Larry cannot deny the speeding involved.
Here a few more moments from RMH, that will forever be in my heart.
Just like any typical kid during a Minnesota summer, my friend’s two sons wanted to have a lemonade stand. At this point, Sam had been in the hospital for about a month. Unbeknownst to her, the two boys had other plans. Their intentions didn’t entail earning money for themselves. The stories they heard from their mom about how RMH had made a major impact on our family, struck a cord in their little hearts. The fine print on the sign they made reads, “all Money goes to ronald mcDonald house!”. They raised $55!! Precious.
One morning I was sitting in RMH beginning a new journal entry for Sam’s CaringBridge. I ventured to the microwave to warm-up my coffee. I was already a bit emotional. As I was waiting at the microwave, I read the back of an RMH volunteer’s shirt.
“This is the house that opens its arms, that feels like home, that embraces the children, that comforts the parents. This is the house where families meet, to eat and sleep, to find their strengths and dry their tears, to look forward with hope to better years.”
Ronald McDonald House Charities
I proceeded to tell the RMH volunteer how true the back of her shirt was. I couldn’t stop the tears from flowing. She didn’t say anything, just gave me a hug. I tried to assure her, my tears, were happy ones, because I was going to take my son home soon.
I never understood the significance of RMH until life threw a curveball at our family. We will be forever grateful for the impact RMH was and is to us today. Since the beginning of Sam’s life, RMH has been a saving grace for me.
Giving to this charity can be as easy as saving your pop tabs. Beer tabs work too. ; ) Each year, the collection we turn in to RMH gets bigger and bigger. People collect them and give them to me. Once a year, I bring the stash to RMH. They make almost $20,000 a year in donations from collecting pop tabs! It’s such a simple thing to do. If you want to start collecting, I would be happy to take the stash off your hands!
Ever since Sam has started his journey here, we have participated in the RMH Family Walk. This year the walk is virtual TOMORROW October 31st! Covid, ugh. Although, we can’t walk, I was able to set up a team last minute and would love your support! I planned to set this up a while ago, but I have been a little preoccupied. 🤣 Please consider donating to this charity that helps families during unimaginable times.
Sam’s day has been quite rough. Man, what a roller coaster. Just when we all think he’s turning the corner, things take a sharp turn in the wrong direction.
Some symptoms are new and others have been off and on since he’s been here. This is nothing. It’s just a fluke.He will get through this.
Please pray for my little fighter. Pray his blood pressure can be controlled. Pray for no more red blood coming from his trach (breathing tube). Pray for less secretions. Pray his lungs are clear on the x-ray results. Pray for no more throwing up. Pray for his heart rate to come down. Pray for his medical team. Pray for his momma, daddy, sister, and brothers too. Pray they can get things figured out and we can go home. Pray for no more sharp turns.