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.
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 doctorwho 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.
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.
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!
Because 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.
After 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.
Thank you for continued prayers for my cousin’s husband. The reason for my the emergency surgery was because he had the strongest or worst type of a MRSA infection. The infection started in his shoulder and moved to his spine. So scary! Unfortunately, he is more susceptible to MRSA because of other health conditions, which make it harder for his body to fight off.
The good news is, he has been doing a lot better! He has been able to walk more with a walker. Please keep him and the family in your prayers as he continues to recover.