More Hurdles

It’s been eventful. The x-rays on Sam’s hips I asked for prayer for showed no change from the x-rays he had in January. Whew. Even though the x-rays showed no change, they were really concerned about the limp he had developed after being sick. Hmmm.

When we saw his orthopedic doctor a week after his x-rays, his limp was gone so she was not concerned anymore. She was convinced he had Transient Synovitis. What the heck is that?! Apparently it’s a very common cause of hip swelling and limping in kids after a viral infection. I have four kids and this is the first I’ve heard of it.

The first line of defense is ibuprofen to help with the swelling. Of course, Sam can’t have ibuprofen. Ibuprofen is on his allergy list because of his chronic kidney disease diagnosis. In this case, his nephrologist okayed the seven day course of ibuprofen. I realized/remembered a few days in, you’re not suppose to have ibuprofen before surgery. Shoot! His procedure to see if his esophagus was strictured (narrow) was only a few days away. Oops. So many things to remember with these kind of kids! We stopped the ibuprofen until after his procedure.

His procedure went well. Unfortunately, his little esophagus was very strictured. I was told I must feel validated. I’m not so sure those were my feelings, but I am glad the procedure gave Sam relief and I wish it didn’t take a procedure to fix the issue.

The way he bounces back from sedation amazes me. I asked a nurse if this is normal and her response was a quick, definitely not. He walked out of that surgery center like nothing even happened.

He made it to school two days before things went downhill again. Per Sam’s home care nurses, he was greeted with the sweetest welcome back from his classmates, teachers, and many others. He hasn’t seen them since October. They were elated to have him back. Many of the kiddos colored Lego Superman pictures for him and wrote the kindest notes that would make anyone choke back that lump in your throat you can’t control when you feel happiness and sadness all in one.

Our Easter was nice and low key with family. The rest of the week was not so low key. We spent two nights in the hospital. Poor guy was miserable. His little esophagus was very narrow again. It’s only been a week and half since the last one! This poor kid! He had another esophageal dilation and we went home the next day with a happy boy.

There are many missing details, but it is clear Sam will need another surgery to hopefully fix the underlying problem. Something has to be done. Feeding intolerance is an issue. We had been working so hard on trying to get rid of his PICC line. We had made so much progress on his feeds. Now we are back to square one until after his surgery on 4/28. Until then, he will only be on TPN (bloodstream nutrition/food) and be out of school until he has recovered from surgery.

I loved the response I received regarding his recent events from one of Sam’s hospital nurses he had when he was a baby.

Dude definitely loves a good comeback story! The ultimate miracle.

ICC Nurse

Another. Major. Surgery. Ugh. As I said, when it comes to minor surgeries/procedures, Sam is a rock star. When it comes to major surgeries, he doesn’t have a very good track record.

This time is going to be different. This time he will not throw any curve balls. This time he will recover quickly. Thank you for believing these things with us. I can’t wait to tell you the good news a few weeks from now.

Sam Strong.

Faith Over Fear.

Update

I’ve been working on this update for a while, and now Sam’s landed himself in the hospital. It would have been a year in May without any unplanned hospital stays. It’s a bummer he didn’t make it to a year, but ten months is a lot to celebrate!

As of now, we know he has a Tracheitis and what looks like a stomach bug. We are still waiting on some labs and a culture. We came in yesterday morning and he was quickly admitted. He’s already made a drastic improvement since he’s been on the IV fluids.

Now for the update I’ve been working on…

We obviously had an eventful December. Who am I kidding, it’s always eventful around here. Sam is generally busy with doctor appointments, but sometimes his many specialties seem to lump together.

We were very happy to hear although his uric acid is still high, since he’s started the new med, it’s significantly lower. We will continue to see nephrology more often to draw labs and get urine samples to stay on top of his chronic kidney disease.

He’s, of course, is a champ at blood draws and it’s been a comical experience each time trying to collect a urine sample. Each nurse who has been with us for these appointments has their own humorous story of collecting a urine sample with Sam and I.

His orthopedic doctor confirmed he still has developmental hip dysplasia. Once a year, he gets x-rays to check on his hips and she gives us the results right after. I’m always amazed at how she remembers specific details about Sam and our family. It makes my mama heart full. It’s a waiting game on when this surgery will happen. The longer Sam can wait, the better it will be for him.

It usually takes at least three or four of us to hold Sam down when he gets x-rays, but I was able to do it myself. I’m always very honest with him on what’s going to happen. He has A LOT of PTSD when it comes to x-rays. I tell him over and over again, “No owies, no owies, no owies…” For some reason, he actually believed me this time and I was able to hold him myself. Success.

We learned before we went to Florida, Sam’s MRI did show some heterotopias spots, and they might or might not be related to his seizures. The bottom line is that there is no big concern for the seizures. Thankfully, he has not had one since November.

His EEG was much more successful than we gave him credit for. Sam’s nurse and I thought there was no way this was happening when we walked in and saw the amount of cords that needed to get glued to his head. Not only did it happen, he did fabulous. We concluded, the tech who did the EEG, did not fully understand the small miracle that took place in the room that day.

That was annoying!

Sam’s other specialties were uneventful. Always a bonus.

I’m excited to announce, we will be going to Cincinnati Children’s in May for Sam’s laryngeal cleft repair!!!!! If you’ve been following, this is three plus years in the making. We’ve had to reschedule twice due to Sam getting sick and having GI (tummy) complications.

Prayers for peace, comfort, easy answers, and a short stay for Sam!

Sam strong!

Faith Over Fear!

As Promised

I have been writing this post off and on since July. Where did the summer go?! And now we’ve already been in school a few months?!

Since our last hospital stay WAY back in May, life was overall good for Sam until August hit. He was mostly healthy and doing all the things. And when I say, all the things, I mean ALL the things. That being said, I will update on the not so great stuff and end with the great things we did this past summer.

I think the reason I have been struggling to continue writing this post is because I was so excited to have only good news. I'll try be a bit brief with the not so great stuff so we can focus on the super fun summer we had with Sam.

We've known since Sam was a baby, he “might” need an eye surgery to correct his lazy eyes. Yes, that's plural for Sam. We have tried patching off and on over the years. His ophthalmologist let us know at his last appointment, Sam will need the eye surgery. We plan to schedule this after Christmas.

One of Sam's many specialists is immunology. He only has this appointment once a year now. To make a long story short, one of his labs was very off at his last appointment. Both his immunologist and pediatrician thought the off labs might be the "c" word. Thank you Lord, after oncology looked over his labs, they were reassured cancer was not the case. This left everyone scratching their heads on which specialist we should see. It was narrowed down to nephrology. Thankfully, this is already a specialty Sam sees because of his hypertension (high blood) issues.

We had our appointment with nephrology and did lots of other testing to hopefully rule out chronic kidney disease (CKD). At this appointment, his nephrologist said, either way they would have to treat the way off lab results as they are at "too dangerously of a high level". Unfortunately, we did recently find out Sam has CKD. The CKD is in the early stage so that is a bonus. We will have to see nephrology more often now so they can keep a close eye on his kidneys.

In the past month, Sam has also had a few seizure like episodes. He saw a neurologist for this and confirmed the episodes were likely seizures. He prescribed Sam a rescue med for if the seizures last more than five minutes. He will have an MRI and EEG done soon to rule anything serious. We are confident and praying there is nothing serious.

Sam will have endoscopy to check on his esophagus and tummy. We will be able to coordinate his MRI with the endoscopy. I try very hard to coordinate sedation procedures/surgeries when I can with this complicated little man! Just call me the CEO of Sam Inc.!

Sam gets poked a lot as is, but the past few months have been more than normal. He was pretty sick for a week in October so this made for even more poking. Thankfully we were able to schedule an appointment rather than having to take him to the emergency room like normal. After all the testing, he ended up being super constipated and had tracheitis. He was pretty miserable for about a week, BUT we stayed out of the hospital!

We will shoot for the Spring to go to Cincinnati again and hopefully get the hole in Sam's airway fixed. Sam's pulmonologist suggested we wait till after winter to go. Cincinnati thought that was a good idea too.

Now, let's move on from the cruddy stuff and into the good stuff! My mama heart was full with the many firsts Sam had this summer.

Fun at Como Zoo.

He was finally cleared by his doctors to go back to school. He started summer school two days a week and loved it.

Sam had only been into a store one time in his life and it was brief. We decided to go big or go home for his first real trip to a store. Yep, the Mall of America. He was mostly in awe of the lights and high ceilings. We went to a dinosaur exhibit next to the mall. Let's just say the mall was much more interesting.

We celebrated Sam's fifth birthday! Swimming isn't the best birthday activity for Sam, but he loves the water so much! If he didn't have a trach, I'm pretty sure he would be in fish in the water. Some day!

Before Sam was born, we spent A LOT of time at our family cabin. Since he’s been born, we have brought him on a day trip once, there and back. Traveling with a medically complex child is no joke. Being on a lake with a child with a trach, again, no joke. It always feels a little odd when someone asks what would happen if Sam fell in the water and our response is, “He would most likely die.” We were also able to go to a friend's cabin twice.

Thank you to all of you who have collected pop tabs for us! We didn't turn them in last year because of Covid, but had a lot to throw in the bin at the Ronald McDonald House Charities. Sam thought it was pretty fun to throw the pop tabs in the big bin. Although, they probably wouldn't admit it, I think Will and Abby thought so too.

We took a spontaneous trip to Duluth. This was a really big deal for us and we were so glad we did. We had a blast!

Sam's first day of Kindergarten! No words from this mama for this emotional day.

"Don't worry mom, I'm ready for this."

Another spontaneous thing we did was go to a Gopher Football Game. Sam didn't like when anyone scored a touchdown. He got pretty scared with all the yelling, but overall had a great time.

"I really don't like all the yelling when a touchdown is scored!"

He, of course, loved the apple orchard.

Sam loved the train ride. I think the girls did too.

Sam's first time EVER in a grocery store! I wondered what people were thinking when I was overly excited to put him in the cart. It's funny what we take for granted sometimes. I remember when my other kids were little I was happy to leave them at home when it came to grocery shopping.

I can't imagine what people were thinking when we taking all the pictures.

We were hoping Sam would be over his sickness before Halloween. He was back to himself the day of Halloween! He has been out on Halloween, but hasn't been trick-or-treating before, partly because of being immunocompromised and partly because he can't eat the candy anyway. I thought he would get a kick of people putting something into his bucket. I was wrong. The first house we brought him to, he tried to go inside. He got pretty sad when he realized we couldn't go inside. This is where it's okay to laugh. We did. We'll try again next year! We had one neighbor who had bubbles and something else for Sam knowing he can't eat the candy. That little gesture made my heart flutter.

We all have stuff, stuff that makes life hard. We can make a choice to see the beauty or focus on the pain. The enemy likes us to focus our time and energy on the pain. I believe when we see His beauty in the pain, our strength gets stronger and our hearts get happier.

Sam Strong and Faith Over Fear!