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.
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.
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.