Well Overdue

This is definitely the longest I’ve ever gone without giving a Sam update. Looking back, the last Sam update I gave was when Sam got decannulated (trach removed) back in June. Of course, much has happened since then. No news is good news, right? For the most part, yes…

In July, we took a trip to the beautiful Montana. We were proud of Will as he did ninety plus percent of the driving. We stayed a few nights in Medora, ND. Let’s just say with Sam and all of his medical equipment plus the four of us, a two-queen hotel room is definitely squishy.

The goal was to do as much hiking as possible. We learned real fast, Sam is not much of a hiker… yet. At first sight of a stick or rock, he plopped himself down and tossed away. If you have been to Montana, sticks and rocks are in no short supply. This worked out quite well for me and Sean. Not being able to take Sam on a full hike meant us taking turns going on hikes with Will and Abby. The two athletes are not the easiest for us kinda oldies to keep up with.

Sam’s trach stoma (hole in neck) was not closed yet, but not having to bring all of his trach supplies cut the medical supply Sam packing list in half. He did attempt to “kill” himself by suddenly standing up from being content with throwing rocks into Lake McDonald and running full throttle, clothes, shoes, feeding backpack and all into the lake. I literally caught him right before he fully submerged himself in the water. Montana hospital stay aborted. Whew!!!

I was overall very impressed with Glacier’s accessibility. Although we could only take Sam so far, there were many very beautiful, accessible trails. It was comforting to see many people not only in strollers, but also in wheelchairs enjoying God’s beauty. It was a trip well worth the work and hope it will be a good core memory for Will, Abby, and Sam.  

The rest of the summer was packed with sports for Will and Abby, the Minnesota State Fair, of course, a fun family trip with Sean’s side of the family to Craigun’s Resort, and Will getting into a fight with a golf cart and needing stitches, and much more, of course.

Swimming with Sam. It happened. His trach stoma did finally close. The seven days we were told, took over a month and a half, but that’s okay. It was surreal to be around water and not have a death grip on Sam’s arm. For the remaining of the summer, both Abby and Will kept asking if I was sure it was closed and if I was sure he could be in the water. Sean felt the same. I did too, but my actions didn’t show it. Sam loved jumping off the edge of the pool. He didn’t go all the way under, but he was close. What a crazy feeling it was to be around water with Sam knowing if his head and neck went under for a few seconds it wasn’t a death sentence.

Summer and September were overall good to Sam. This mama heart was mostly focused on trying to enjoy some of Will’s lasts as a senior in high school. How did that happen?! It was fun to take Sam to more football games. Sam does okay until the crowd goes wild and then he’s out. We found some amazing noise cancelling headphones for him and he enjoyed his iPad while we were able to actually watch the football games.

Loving his new ‘big boy’ bed.

Football came to an end early for Will. Poor guy tore his ACL. He had surgery, which led him to a nine-month recovery. It was a bit weird to go into surgery without Sam. At one point, one of the nurses asked if I was a nurse. I just laughed and said, “No.” My favorite part was post-op. Will was pretty loopy. The nurse asked what I did for a living. I told her I was just a mom holdin’ down the fort at home. Will stepped in, sounding like he had way too many and said, “Ahhhh, not just that. She has a nonprofit, Bruh.” Not anything you want to see happen to any kid, but even more of a bummer for a senior. His mental toughness could not make me more proud. And of course, he’s killing the recovery process.

We had a hard hit in October with the loss of my mother-in-law. She was an incredible lady. It’s funny how they say, you don’t know what you take for granted until you lose someone you love. This could not be more true. She was the most loyal person I have ever met. She was always there. The day of Will’s surgery hit me hard. I missed her phone calls and texts asking how his surgery went. I missed her showing up at our house unannounced to check on Will. It didn’t matter if Sam was in the hospital for seven months, two months, or a week, she was always checking in, asking how he was and when would he be able to come home. She never stopped asking about Ryan and if he was okay. I can hear her saying, “I pray for him every single night.” I know she still is. Although it was hard without her on Thanksgiving, I was thankful we could all be together. Her family was the most important thing to her, and it showed. Lots to be thankful for us.

With the S3Kit ‘In Your Shoes’ Night Out, there was much to do and focus on. What a wild ride that has been. I cannot believe how far we have come in such a short amount of time. I’ve been told God is amazing at opening doors. Over the years I've learned that sometimes I open one of these doors and what I see looks impossible. I find the more I walk through those seemingly impossible doorways, the more HE shows up and does incredible things! Because of this, since March of 2020, 125 baskets have been gifted to families who will take their child home from the hospital with a trach. We learned more than ever this year that the need and the impact is great. We are so excited to be able to bless more families and caregivers next year.

Fall has been a bit rough on Sam. When he had the colonoscopy in June, one of the biopsies showed inflammation in his intestines, but the cause, of course, was unknown. He started on a medication to hopefully reduce the inflammation, but with some other testing, it’s proving to not be working. After the holidays, he will have another colonoscopy and a MRE. This is like a MRI, but uses a contrast to hopefully diagnose the inflammation. 

In November, we noticed Sam’s trach stoma (hole in his airway) reopened. We don’t know for sure, but it’s likely the hole reopened because of the extra retching and throwing up Sam’s had over the past few months. The hope is that it will close again on its own. We will see his ENT in January and the hole will be closed so it’s going to be a wasted appointment. Let’s do this, Sam!

That’s enough with the negative. The past week has been very good for Sam! He has not had any retching or throwing up. He is also not having any severe tummy pain episodes that last thirty to forty minutes. This is a huge success as the past few months have been filled with several of both throughout the day.

It’s a win and we’ll take it.

Whatever small or big win you have today, I hope that is your focus. Life can drag us down with the unknowns and waiting. I hope you can rejoice in all the little wins.

If you are missing someone this Christmas, I hope you can enjoy the memories you made and the hope the Christmas season brings us in seeing them again someday.

Wishing you and your family a very Merry Christmas!