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!

Sam Update

I recently realized I hadn’t given an update on all Sam’s procedures done at the beginning of June. No news is good news, right?! Pretty much…

As we suspected, Sam’s MRI was mostly normal. We have nothing to worry about. His pediatrician was a little worried about his head size only being in the less than one percentile. I wasn’t worried, his head fits his tiny body. The MRI only proved that.

All of Sam’s biopsies came back negative. Yay! They did find some gastric tissue in his esophagus, but that isn’t anything they are worried about. It most likely happened at the anastomosis, or in layman’s terms, when they connected his esophagus to his stomach way back when.

Both Sam’s GI surgeon and GI doctor were stumped on what was going on with him. It didn’t seem right dilating Sam would solve the retching issues for a little while. His GI doctor suggested Sam might have Cyclic Vomiting Syndrome as it seemed to be the only thing that would make sense at this point. It still doesn’t make sense why dilating his esophagus would seem to solve the problem the last few times, but for whatever reason it did. Bottom line, his GI surgeon knew that didn’t sit right with him so he consulted Sam’s GI doctor. Everyone is doing what they can, when they can. Trust me, I know they lose sleep over Sam.

After the day of unsolved mysteries, they decided to do two things. They started him on a new med that would treat the Cyclic Vomiting Syndrome, and also put in an order to do testing while he’s having the obnoxious episodes of retching. We are way past the time he would have terrible days of non-stop retching so the new med seems to have solved the problem. This time, like so many others, goes to show what happens when doctors collaborate. We are so blessed to have the care team Sam has.

Sam has been doing awesome. Now, knock on wood. His GI surgeon and ENT surgeon talked and decided they are very happy Sam is doing so well, but they would both like to see him do really well for two to four months before we talk about scheduling his next big surgery. That means Sam has to stay healthy along with very little retching episodes until the end of August. So far, so good.

We’ve never gone longer than a month without something going wrong with Sam. It’s been over two months since Sam’s had any issues! It’s kind of a weird feeling. There’s a part of me sitting on edge waiting for the next thing. And the other part is rejoicing and hoping/praying this will continue. Pray it does!

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