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The Long Story on the Big Surgery

I have to admit, on the inside, I was a complete wreck the few weeks leading up to the surgery. My head was telling my heart things that were not pretty. Although, they were all justifiable, I was worrying, which I means, in my opinion, I wasn’t trusting God. When your surgeon tells you, many times, over a two year period, if the surgery doesn’t go well, we won’t take our son home with us, as in he will not make it, you can probably imagine, what was going through my head.

My husband would tell you he was pretty much a punching bag the last few days before surgery. He’s right. I can only say thank you to him for letting me. Ya know the whole Yin and Yang thing? Well, l can tell you, after twenty years. It’s for real, at least with us, it is. Corny, I know, but I couldn’t do this journey as well as I have without him by my side.

The day of surgery was, of course busy, but quiet. Sam’s nurse even commented on how unusually quiet Sean and I were that morning. We had Sam’s normal six bags to leave the house and this time, my suitcase packed. His normal bags, just to leave the house, include oxygen, an emergency bag (the size of a large diaper bag), feeding backpack, suction machine, pulse oximeter, and of course, a regular diaper bag. Although you would find many things in Sam’s regular diaper bag you would in a typical toddlers diaper bag. Sam had his nebs, meds, a bath, trach and g-tube (feeding tube) cares done. On the outside, we were all ready to go.

Our nurse helped us pack Sam in the van and we were off, me driving and Sean in the back. Someone always has to be with Sam in the back, in case he needs to be suctioned or any other nursing duties need to be done. When we arrived at the hospital, Sean and I realized neither of us said a word to each other the entire drive, which is not normal for us. Later, Sean told me he was planning Sam’s funeral in his head. My thoughts weren’t very far off from his. My stomach was in knots. When we finally got to the hospital, we found our normal handicap spot and sat there silently for what felt like an hour, but was probably only a few minutes. As we started unpacking the van, Sean suggested going home. I said, okay, with a smile. I think we were both a bit serious, but knew we couldn’t.

We unpacked all of Sam’s things, strategically placed them in their special spots on the stroller, and again, quietly walked across the skyway to the Welcome Desk at Children’s, like we have so many times.

Sam was more than ready. Per the anesthesiologist who saw him this time, you would think he would not be this happy here, especially considering how many times he has had to go through this. He’s a trooper alright.

We said goodbye to Sam for the thirty somethingth time and went to our usual private family waiting room in the surgery waiting area. Eat. Pray. Wait. Pray. Wait. Pray. Wait. Pray. Wait…

Thankfully, there was a GI surgeon to check Sam out before the surgery to make sure he didn’t need another dilation, which would have cancelled the surgery, again. Sean would tell you he was kind of hoping that’s what would have happened. When GI was done, as they always do, he came and showed us the results. I’ve seen A LOT of pictures of Sam’s esophagus, and for the first time in Sam’s life, it looked beautiful!

As soon as the GI surgeon walked out of the room, Sean and I just looked at each other with fear in our eyes. I told him, “He’s (Sam) got this.” And again, we waited. Pray. Wait. Pray. Wait. Pray. Wait. Pray. Wait…

About two and a half hours later, which really isn’t too long in our world of surgery waiting time, Sam’s ENT surgeon walked into the room with a big smile on his face, two hands in the air, both his pointer and middle fingers crossed. Whew. I’ve been told he’s not a surgeon to be nervous or at least show any nervousness. He was definitely nervous that day. In the two years, we’ve know him, I’ve only seen him nervous once. He was very happy, but told us not to thank him yet, and “knocked on wood” several times. He looked at me with sincere relief, reminding me of what could have happened, and I know, a weight was lifted off his shoulders.

The reason Sam’s ENT didn’t want us to thank him yet is because we won’t know until November 27th if the surgery worked or not. Basically they sewed the hole in Sam’s airway shut and the sutures can easily break open, especially when Sam refluxes, which is something he does quite a bit.

They will do a swallow study to make sure the food only goes down his esophagus and not into his lungs. I’m not sure how they do a swallow study on a kid who’s never eaten anything by mouth. No one else seems to know that answer to that question either, but they scheduled the appointment so someone must know the answer. We’ll see. I like to burn those bridges when we get there. There’s no sense in worrying about something I have no control over. Yes, I’m eating my words right now. ; )

We will go into the appointment with high hopes, low expectations. As some of you might recall, I wrote about this on Sam’s CaringBridge back in August of 2017. My thoughts haven’t changed…

High hopes, but low expectations, leaves less room for disappointment. Some might disagree, but I believe life is easier this way and there leaves little room for premeditated resentment. William Shakespeare once wrote, “Expectation is the root of all heartache”. I think he was pretty spot on. In life, there is very little we can control. I want my kids to see I choose happiness over hopelessness and faith over fear in every situation we face. I want them to see how attitude can change everything even when things don’t go the way we think they should.

I hope you have a Happy Thanksgiving! I know my list of things to be thankful for is pretty long, life being my number one, right now. One of Sam’s nurses shared with me something her wise mother, in my opinion, encouraged her to do every day ever since she was a little girl. She told her, no matter what she’s going through, each day, find three things to be thankful for. Life isn’t perfect, we are not perfect, but I’ve found gratitude can sure make the road quite a bit smoother.

Short Story on the Big Surgery Today

Surgery is done.

We are home.

We’ll find out in four weeks if it worked or not.

Besides a few, quick scary moments, Sam is doing awesome!

We are very tired, and even more, mentally drained.

We can’t thank you enough for your prayers and meals!

That’s the short story. The longer version is coming soon…

Sam Strong!

Faith Over Fear!

Surgery Jitters

After over thirty times of sending my sweet little boy off to surgery, I am still nervous to do it again. Tomorrow at 1:30PM, they will attempt to close the hole in Sam’s airway (trachea). We’ve now waited for two years to do this surgery. As with any surgery, there are risks involved, but some have many more, like the one one Sam will be having tomorrow. A tracheotomy has many more risks. The surgery is what is best for Sam in the long run. Of the two surgeons performing the surgery, the main surgeon has only done this particular surgery ten times and this will be a first time for the other surgeon. That being said, there are a few more jitters in my heart today.

You can worry or trust God, but you can’t do both. I heard this on the radio the other day. I am choosing to trust.

Pray the surgery goes well. Pray for the surgeons hands and all the other medical staff who will be involved. Pray Sam doesn’t throw any curve balls, as he’s unfortunately famous for. Pray for a smooth and quick recovery. Pray for our hearts to trust God and not worry.

Sam Strong!

Faith Over Fear!

 

Sam Update

We’ve had a few good days! Thank you Lord! And thank you for the prayers. This little boy sure knows how to keep all of us on our toes! I thought for sure his surgeon would cancel surgery, but, thankfully, I was wrong. As of now, surgery is still scheduled for Monday! I say that, with a bit of fear and excitement all in one.

It’s been a long week around here. Sam getting sick is no comparison to my other kids getting sick. We don’t know what we would do without our home care nurses. Thank you so much to all of you. It’s because of you we get to keep Sam at home.

Also, another shout out to his care team. They are the best. As you can imagine, Sam has a pretty big care team. Depending on what’s going on with him, we call the appropriate specialty. Often, we call a few different specialties, because there are so many things going on. Each different specialty works together with the other. Communication between Sam’s care team is one, in my opinion, of the many reasons Sam is still here today.

Remember the doctor who had the bad reviews? He is the main surgeon who will be doing Sam’s upcoming surgery. When we called his care team to let him know what had been going on with Sam, they told me a few times, he wouldn’t get back to me until the next day, as he was going to be in surgery all day. Makes sense. Guess what? He might have been in surgery all day, but he called me personally that evening. Any of you who are in the medical world or have had surgery, know, surgeons often go through their nurses. They don’t generally call their patients personally. Every time, we have had concern with Sam, he calls me personally. Yet another reason, I get a bit fired up when I see the bad “Google” reviews on him. : )

We had to cancel a lot of appointments for Sam this week, but we didn’t end up having to cancel his haircut. We are so fortunate to find someone who will come to our house to cut his hair.

Message_1540429133445 Sam Strong!

 

Prayers for Sam

Well, Sam has officially come down with something. He’s been fighting something for a few weeks, but seemed to be doing it on his own, for the most part. I guess not. We are only nine days away from surgery. Unless he gets better quickly, they will likely cancel surgery. Please pray he can fight this off without going to the hospital. Thankfully he’s not on oxygen, but we are bordering having to start.

I recalled a post I wrote almost exactly a year ago. I changed a few things, but the feelings haven’t changed much…

Unfortunately, fear creeps in pretty quickly with Sam when he gets a fever. When my other three kids were little and they spiked a fever, fear wasn’t even a thought for me. Usually with a little TLC and some ibuprofen, or maybe a quick trip to the clinic to get them on an antibiotic, they were fine eventually. Sam is a whole other story.

It’s not just a fever for Sam. It’s even closer monitoring than we already do. It’s keeping an extra close eye on his sats and heart rate. It’s adding several more nebulizer treatments throughout the day. It’s canceling plans, again. It’s doing everything we can to keep him out of the hospital, but doing that can be scary too. It’s hoping whatever doctors are on call know Sam and his story. Thankfully, most of them do. It’s double checking the oxygen tank and Ambu bag. It’s not wanting his nurse to leave at 7:00. It’s staying up most of the night on high alert. It’s praying earnestly for God to heal whatever is going on with Sam and to calm my nerves. It’s praying God will help us remember all we learned during our Tracheostomy and Infant CPR class so long ago in the hospital, in case things go south. It’s so much more, but overall, it’s faith over fear.

Sam’s Surgery

It’s official. Sam’s next, and hopefully, final surgery is scheduled for October 29th! I know I have said that before, but hope is a much better outlook then fear. I will choose hope over despair any day. It’s what gets me through my everyday.

Before Sam’s appointment to see if we could schedule his surgery or not, I fell upon some reviews on his doctor. I felt so sad after reading. Let’s just say, I couldn’t believe, was a little offended, and quite frankly, appalled at some of the comments I read. You guessed it, they were not good.

We have known this doctor for two years now. He has performed two of Sam’s many surgeries. In our opinion, he communicates very clearly, listens to our concerns, pays attention to every detail, and is extremely kind. Our homecare nurses, who have met him, would hands down, agree.

I shared beforehand with the nurse who came with us to the appointment, and who had never met this doctor previously, about the reviews I had read. After meeting him, she too couldn’t believe the terrible reviews he had. She thought he was wonderful. What’s sad, is I thought, maybe, I would find something negative about him. I didn’t and I’m glad I didn’t. I only trusted him more and know he will do everything he can for Sam.

On one occasion, when Sam still lived in the hospital, after another cardiac arrest, he left his clinic, told me we had been through so much, hugged me, and left the hospital. So, when I read people felt his bedside manner was terrible, I wanted to jump through the screen and tell them what he has done for my son and our family, and how wrong they were to make a hasty judgement on an incredible doctor and surgeon who cares deeply about his patients.

So like I said a few years ago, be careful before you “Google it”. This same doctor has also been rated a top doctor by MN monthly for several years in a row. I realize I’m a bit bias, but I think if you were in my shoes, you might feel the same way. He has literally saved my son’s life.

Please pray Sam continues to stay healthy for surgery. He has been fighting something, but seems to be fighting it off on his own for the most part. We’ve had to boost his nebs and give him some steroids, but that’s HUGE progress for him from in the past!

Sam Strong!

Many Thanks to the Gopher Football Program

20180923_182602Because of Sam, his great story, and a simple oar we made for the Gopher Spring Game in April of 2017, we were recently invited to a closed Gopher football practice. We went not expecting much. We were just excited to be up close with the team. Coach Fleck thanked us for coming and sincerely interacted with each of us.

The Gophers went above and beyond. After practice, every single player came by, signed a poster for Will and greeted each one of us personally. Inside, I was a nervous wreck as most of them were high fiving Sam. Remember, a simple cold can easily send Sam to the hospital. After, Sean and I discussed whether or not we should have stopped them. It made me feel better knowing Sean felt the same way. It was so endearing watching Sam’s reactions as well as the players while their massive hands high fived Sam’s tiny hand. Don’t worry, we sanitized the heck out of his hands after. As always, anytime we take Sam in public, we are all on high alert for the next three days, hoping and praying he doesn’t get sick. All clear this time!

It’s not over yet.

20180923_183849After the personal autograph session, we had a personal tour of their beautiful training facility. Will use to say he wanted to go Harvard, then it was Stanford, and now he wants to go to the University of Minnesota and play football for the Gophers. After our personal tour, I’m not so sure his decision will waver again. Both Sean, a Gopher football fan through and through, and Will were in heaven.

On our way home, Will said, “Sometimes, when Sam’s taking up all of my time, I think, I wish you were normal, and then we get to do things like this.” I, of course, started crying. Will responds, “Mom, that’s like the third time you’ve cried today.” There were several reasons I was crying, but mostly, my heart was extra full.

His comment threw me a little off guard. You see, Will has never once complained about Sam and how much work he can be. Will is so good with Sam. I love to watch how much he loves him and interacts with him. I am happy Will feels he can express his feelings. I reassured him those thoughts were completely normal, I was glad he felt he could share them, and not to stop.

Those of you who are not familiar with the Gophers head coach, P.J. Fleck and where his “Row the Boat” mantra came from, take a minute to watch this video.

Do you know there are people out there who mock “Row the Boat”?! It breaks my heart. Like P.J. Fleck told us, when you allow your life to go public, people will scrutinize. That’s true, but you have to be strong in order to put up with the scrutiny, especially when it relates to losing a child.

Although not planned, the other family from the Pioneer Press article was there also. Wow, what an incredible family. I’m not going to lie, it felt a little uncomfortable. I imagine, the wounds are still very fresh as it wasn’t very long ago, they lost their daughter. Although, I believe, grief has no time limit. Time and faith might make life a little easier, but it doesn’t heal the pain and heartache of losing a child. Life with Sam might be tough sometimes, but I’ll it say over and over again, we got to take him home. My heart aches for those who don’t get to do that. Thank you to the Conn family who were so warm and welcoming to us.

Thank you to P.J. Fleck, the rest of the staff, and all of the players who made my son’s (and secretly my husband’s) day, and maybe year. Sam probably won’t remember it, but I know, the rest of us will.

Row the Boat!

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Sam Strong Oar
Can you find our “Sam Strong” oar?!