Quick Sam Update

We decided to reschedule Cincinnati. After realizing Abby had soccer tryouts while we would be gone, we thought we didn’t want to not be here for her. We also would have had less than a week and a half to plan. That would be a tall building to leap with Sam!

Now we are waiting to get another phone call to reschedule. We thought we’d here back from them this week, but we didn’t. Hopefully we’ll get a call next week knowing they want to reschedule for August.

When it comes to Sam, we’re always waiting for the next thing. When you are in a constant Waiting Place under circumstances at no fault of your own, it’s much healthier to live in the moment than to dwell on the waiting.
Dr. Seuss
We choose not to stay in the Waiting Place.Dr. Seuss
Will (13), Abby (12), Sam (4)

Cincinnati Called Today

I was thrown very off guard this morning when Cincinnati called to schedule Sam’s next surgery.

“Does July 23rd work for you?” she asked. I was thrown even more off guard! Does she know we live in MN? Does she know my son is trached?

“Yes I think it will work. We will make it work.” I responded.

Right now we’re processing. There’s a lot to think about and do in a very short amount of time. It’s exciting and nerve racking all in one.

We’ll figure it out.

We’ll get it done.

Sam Strong!

Faith Over Fear!

Just Another Surgery

Tomorrow, Sam will have his forty somethingth surgery. I thought this string of texts between Sam’s teacher and I was kind funny and also shows our perspective on surgery.

Me: Hello! I just wanted to let you know Sam will not be at school this Thursday (10/3) or next Wednesday (10/9). He has a pre-op and then surgery next week. He usually recovers very quickly so hopefully he will be able to be back at school the next day!

Sam’s Teacher: Wow. Ok.

Me: Lol. After sending that…I realized not everyone thinks surgery is no big deal. My world is a bit skewed. 😂

Sam’s Teacher: Perspective is everything.

Me: It sure is. 😊

Me: And attitude. 😃

Sam’s Teacher: Amen.

When Sam was in the hospital a few weeks ago, his GI doc thought it would be a good idea to scope him after he was feeling better. They will look to see if his esophagus is stricturing again. Let’s just say, based off Sam’s symptoms, all of us will be a little surprised if Sam does not need another esophageal dilation.

Once GI is done with their part, Urology will step in and do theirs. This is the 2nd of Sam’s new diagnoses I was talking about that would need surgery. The doctors assumption was correct, Sam would be having surgery in the near future. We did what Urology said, and asked to have them scheduled as well. Quickly, the surgery with both docs was scheduled, which meant we would need a pre-op exam before then. How many times does one have to have surgery in order to get a free pass on pre-op’s?! Just kidding. Thankfully, Sam’s pediatrician almost always finds time for him in her busy schedule and we got the pre-op done.

Even though surgery doesn’t seem like a big deal to us, it doesn’t mean we don’t get nervous. The easy part comes from knowing how to prepare and what to expect before and during. We know how many hours before to stop Sam’s formula and when to start and stop the Pedialyte, exactly where to park, where to go, where the bathrooms are, what the doctors, nurses, surgeons, and anesthesiologists will do and ask, and where to get something to eat. Although a little nervous, we will leave the outcome to Him.

Don’t forget to say an extra prayer for Sam tonight and tomorrow!

Sam Strong!

Faith Over Fear!

Image result for it doesn't get easier you just get stronger

Admitted.

In the two and a half years Sam has been home from the hospital, we have made many trips to the emergency department (ED). In those two and a half years, we’ve always been able to go home, which according to everyone here is just shy of a miracle given Sam’s history. Although we love the people here, we do everything we can to stay out of here.

Unfortunately, there isn’t a clinic or urgent care for Sam. When things go south, it’s either maintain at home or go to the hospital. And unless Sam’s feeding tube comes out or one of his docs wants him to be evaluated, we do our best to maintain at home.

Poor buddy isn’t feeling so great.

Based off Sam’s symptoms, Sam’s GI (gastroenterologist) doc instructed us to take him in yesterday. I was a little shocked when the ED doc thought it would be best to keep him. I, of course, did not plan for getting admitted. No extra clothes or toothbrush for me. I feel like I have to keep apologizing for my stinkiness. 😂

I thought once Sam got some IV fluids in him, he would perk up and we’d be heading home. Not so much. He’s still the same little lethargic boy we brought here yesterday. He’s not worse, but not better either.

Even after fluids, he’s still not feeling so hot.

They are checking all the boxes and are trying to figure out what’s going on. It could be tracheitis, which doesn’t show up for twenty-four to seventy-two hours. He might need another dilation. It could be just a cold. Although, like I’ve said in the past, it’s never “just a cold” for Sam. There are plenty of places he could have caught something. The two biggies are starting school and being in the ED last week cause his feeding tube came out. School = germs and the ED = even scarier germs. They are also monitoring his blood pressure as it has been elevated. With his history of hypertension, there is concern, but they could also be up because he’s sick. Again, there are so many things it could be. There are usually no easy answers with Sam. He a complicated kid.

Let’s pray whatever it is, it will run it’s course and/or get fixed without complications. As of now, he needs to tolerate feeds before we go home.

As always, staying Sam Strong.

3rd Annual Ronald McDonald House Walk

“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.”

I never knew the impact of Ronald McDonald House (RMH) Charities until life threw a curve ball at my family. If you don’t already know, RMH Charities provides a home-away-from-home to keep families close during a child’s serious illness. For over seven months, they did just that, and more for my family. Please consider donating or walking with us.

Click here for more information on donating and/or walking. 

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