Laryngeal Cleft Repair – Superman Sam's Survival Kit

Procedures Update

Published on December 2, 2022 by Jamie Grant1 Comment

The excitement of breaking out of jail made me forget to update on the procedures Sam had while he was still in the hospital. Obviously, from the last post, he recovered very well.

His GI doctor dilated two different areas of his esophagus. Because Sam’s esophagus is not attached to his stomach, it’s been hard to scope the inside of his tummy. She was able to take his feeding tube out, and although it wasn’t easy, she got the scope through, and was able to take a look. Not surprisingly, his tummy looked rough. She took biopsies. We are still waiting on the results, but generally, no news is good news. Probably too much information, but she also scoped his rectum and everything looked good down under.

His ENT gave the GOOD NEWS that his laryngeal cleft is still repaired and his airway looks good. Or best news. We are on track to work on decanulation (getting his trach out) in the the Spring!!!!!

We are settling at home with a PICC line. Sam is doing great, but his poor skin is a mess. We discovered he’s allergic to the dressing. They are now doing dressing changes every two to three days, instead of weekly, and prescribed him a topical steroid.

The more frequent dressing changes are a drag because three of us have to pin him down for a good ten to fifteen minutes to keep his arm still and sterile. Sam might be a little guy, but he is very strong and flexible. I think the scariest part of a PICC is the the importance of keeping it sterile. The risk of infection is low, if you’re doing all the right things, but a bloodstream infection is serious.

Thankfully, I am much more comfortable with all things PICC line, except for the major frustration of getting air out of his TPN (nutrition) infusion before I hook him up at night. Air in the bloodstream, not good. I’m not one to use curse words very often, but they’ve been slipping out this past week more than I would like to admit. The infusion nurse told me, in time, I will get it. Hopefully by that time, he won’t need the PICC anymore!

The plan is to give his gut another week of rest and then talk to his GI doctor about possibility trying feedings again.

Continued prayers for no PICC line complications and patience for me with starting Sam’s infusions.

Faith Over Fear

Sam Strong

Miracles Still Happen

Published on July 12, 2022 by Jamie Grant14 Comments

We went into Sam’s procedure with high hopes and low expectations. After what happened in Cincinnati, the odds of the surgery working were not in Sam’s favor. Here’s my analogy. Let’s say you get five sutures (stitches) in your airway. Within minutes of waking up after surgery, you start throwing up every fifteen minutes. The pressure from throwing up is most likely going break open all of the fresh sutures that were just placed. It makes sense that everyone had very low expectations, that few, if any sutures would stick.

When Sam’s ENT came to talk to us before the procedure, he told us he spoke with the ENT who did the surgery in Cincinnati and heard what happened. I told him, my hope and dream is that at least two sutures stuck. High hopes, low expectations. He responded, ”We’ll see.”

Feeling a little loopy from the Versed, and although more calm, still not excited for what’s about to happen.

We’re getting close to seventy times I’ve had to watch my little boy get put under sedation. At this point, we have a pretty solid routine. We see all the staff who need to meet with Sam and I before surgery, they get vitals, we go over ALL his meds and records with the nurse for the umpteenth time, I make sure the right labs will be drawn so Sam doesn’t have to get poked more, sign all the paperwork, make sure Sam gets Versed, keep snuggling my poor, very stressed out little boy, and then give him one last kiss before they roll him back to the OR. I take a deep breath, say a short prayer, and the nurse (or Sean, depending on who’s with me) and I walk to the cafeteria to get something to eat.

We go back to the waiting room, eat, and depending the the procedure, wait. This time, I look at Sam’s nurse and start praying. Let’s note, I am not always good about praying before meals. “Lord, bless our food and I pray two of the sutures will stick. It would be really great if three of them stick. And if your having a really good day, please make all five of them stick.” Sam’s nurse responded, “Amen.” We started eating our food.

I think I forgot Sam’s previous procedures usually have two to three doctors doing something or a surgery that takes longer, because I had only two bites and Sam’s doctor came into the room. He said, “Well…two of the sutures stuck. And actually, three of the sutures stuck. And actually, all five sutures are still in tact.” Instant tears from me and Sam’s nurse. I had the same feeling in my heart, mind, and soul on the day the doctors told me they were able to attach Sam’s esophagus. Pure shock. An absolute true miracle. Thank you Jesus. Sam’s ENT had already called the ENT in Cincinnati to let him know, and his response was, “Wow.” Enough said.

He has no idea the greatest news we just got!!!!!

Sam always has to throw a curve ball somehow. We were cleared to leave at about 12:30pm. This would have been record timing for a procedure with Sam. We started packing things up and the nurse came into the room. “Sorry, I can’t let you leave, his potassium is 8.3.” What does that mean?! Apparently, that is heart attack level. If I’m being honest, I had zero worry. Sam. They checked it again right away. It did go down to 7.4, but that is still very high. Lab came to draw blood from his other arm. Even after being put under, it still took three of us to hold him still. Poor buddy. The nurse laughed at me when I put the call light on to show her the new results on my phone. “4.1”, I told her, “We can leave, right!?” “Yes, let’s get you guys out of here!”, she said.

We have been waiting for this since Sam was two months old. He had the surgery done twice here and it failed, likely because of his retching.

We really needed a big win. Thank you Lord.

Now what?

This is the first MAJOR step in being able to remove Sam’s trach (breathing tube). LIFE CHANGING. Sam still has A LOT to overcome, but this surgery is a HUGE win. He will have a swallow study and see his GI (gastroenterology), ENT, and pulmonology. And then hopefully, he can start feeding therapy!!!!!!

Thank you for your continued prayers. I truly believe they have brought Sam to where he is today.

SAM STRONG

FAITH OVER FEAR

Psalm 27:14 says, “Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord!” I find so much peace in this. When I wait on Him, it’s not a waste of time. It might be incredibly hard, but it’s not a waste of time. The more I wait on Him and not me or others, the more He seems strengthen my heart.

More on Cincinnati and Update

Published on July 1, 2022 by Jamie Grant5 Comments

Before Sam’s surgery, we had some fun at the Cincinnati Zoo again. Sean was nervous about Sam and being around all the people, but it was nice to be able to do something “normal” with Sam since we had to have him in a bubble the month prior. Doing normal things with Sam always tugs on my mamma heart. Sam was more interested in trying to pull leaves off trees, and snatching my sunglasses off my face to throw in the ostrich cages. And, of course, his nose (filter for his trach) went flying too. So, if you go to the Cincinnati Zoo anytime soon and see the ostriches wearing sunglasses…

Our hotel didn’t have a bathtub so we had to improvise. Sam thought taking a bath in the kitchen sink was great. It was a lot less stressful for Sean and I too, because Sam LOVES the water. If he was able, I think he would have his head under the water all the time. He has no idea what would happed if he completely submerged himself in water. He is very brave around water and is constantly trying to put in head under, which makes bath time and water in general, pretty stressful for us. My heart skips a beat when I think of Sam without a trach and the day he can completely submerge himself in water. I think he will be a fish. Oh happy day.

When we knew we had to cancel our flight home because Sam was misbehaving, I instantly started looking for one way flights. It was not looking good.

We found out on a Wednesday evening, Sam would be discharged the next morning. The soonest flight out I could find was on Friday morning at $835 a piece! Not happening. The flights for the following week weren’t much better and we did not want to be stuck in Cincinnati any longer. Will and Abby were perfectly fine at home with my niece holding down the fort. I think they would have been happy if we were gone longer.

We decided to keep the rental car and drive home. We quickly packed Sean’s things at Ronald McDonald House (RMH) after Sam discharged, but couldn’t pass up the free toy from RMH for Sam. Of all the toys, he picked the doctor set.

Sean and I had to play a little Tetris to make everything fit in the SUV, but we did it. We were definitely homesick.

Sam does not travel lightly. And there were still six boxes waiting at the hotel for him!

Two days later, we made it home. Sam did surprisingly well with two full days of driving in a car. Sean and I were exhausted and very happy to be home. Sam was happy to see his siblings.

It has been almost six weeks since Sam’s surgery. We wait one more week to find out if the surgery worked or not. When I asked the doctor in Cincinnati if he thought it was a zero percent chance the surgery worked because of what happened, his response was, “The only person who knows that, is not in the room right now. We just have to wait and see.” Hmmmmm. Faith over fear, Jamie.

Sam’s ENT trained under the ENT who did the surgery in Cincinnati. Thankfully, we don’t have to travel back to Cincinnati for Sam’s bronchoscopy to get the news. Our expectations are low and our hopes are high for the news. It’s yet another sedation for Sam. Prayers everything goes smoothly next Friday.

Like my friend said, ”I figure no news is good news.” Yes, since we’ve been home, Sam has been doing great. We’re still moving slowly on his feedings, but he started at twenty-four hours a day six weeks ago, and is now down to eleven hours a day! And barely any retching! Progress!

He has had zero signs of intussusception. We’ve all questioned if the intussusception was happening longer than we think. It’s a hard thing to catch because they can only see it on ultrasound or x-ray when it’s happening. It’s likely the other feeding tube (j-tube) is what was causing it, which then makes its less likely to happen again. Continued prayers Sam will not get intussusception again.

And BIG Happy Birthday to my sweet boy today!!!!! We’ve kept you alive for six years now! Everyday we get with you is a blessing we didn’t think we would get from day one. I’m incredibly thankful we live where we do, knowing in many other places, you would not have made it past the first day. Keep doing what you do best, by making other hearts a little bigger.

Faith Over Fear!

Sam Strong!

Another Complication

Published on May 23, 2022 by Jamie Grant5 Comments

Sam has intussusception again. I don’t have the energy to go into details of his day yesterday, but if you could guess, it wasn’t great.

We had some hope during the day yesterday we wouldn’t have to change our flight, but by the evening, we knew we would be staying longer. Hopefully not too much longer.

We’ll find out soon if he’ll need surgery or not.

I’m not really sure what to ask prayer for. Whatever will make Sam feel better the quickest and get us home the soonest. And so much more.

Sam Strong!

Faith Over Fear!

Rough Go

Published on May 21, 2022 by Jamie Grant3 Comments

He had a few moments of slight smiles yesterday, but overall, Sam has been pretty miserable. He threw up and retched about every half hour throughout the night, if not more. It will be a miracle if this surgery works. And it WON’T be Sam’s first miracle!!!!!

The doctors said if he can get the nausea and vomiting under control, we can leave later today. This hospital is awful nice and they do things very well, but it’s not home. I don’t like hospital stays, but when we’re home, I know the system and almost everyone knows Sam. There’s a lot of comfort in that.

Please pray Sam will not have anymore nausea, vomiting, and for no other complications. Let’s get this sweet boy out of here!

Sam Strong!

Faith Over Fear!

Airway Surgery

Published on May 20, 2022May 20, 2022 by Jamie Grant8 Comments

Sam is out of surgery and doing well. Pray for a smooth recovery and NO retching. No one knows for sure, but it’s highly likely Sam’s retching was what caused the previous surgeries to fail.

They told us surgery would be an hour, to an hour and a half. We waited for two. This kind of extra waiting is always hard. A half hour can feel like it does to a toddler, which feels really, really long. Breathe.

We weren’t planning on it, but we will be staying overnight so they can keep a close eye on him. Pray Sam will behave himself so we can go back to the hotel tomorrow.

Now we wait some more. Typically, patients come back six to eight weeks later to find out if the surgery worked or not. Sam’s new ENT in Minnesota trained directly under the ENT who did Sam’s surgery in Ohio. Thankfully, we will get to do the follow-up at home. Traveling with Sam is an experience we don’t want to do often.

We will wait patiently until July eighth to find out the good news.

Sam Strong!

Faith Over Fear!

Less Than One Week!

Published on May 14, 2022 by Jamie Grant6 Comments

We are less than one week away from surgery!!!! Sam is doing great! He can’t be school, but we are doing our best to keep him busy. With the help of his teacher, his nurses are doing a great job of bringing some aspects of school home. Have I ever mentioned how thankful we are for our home care nurses? Incredibly. And, of course, the beautiful weather helps. Sam LOVES to be outside.

I am so excited and nervous all in one for this surgery. It’s THE surgery that’s been in the making for over five years. It’s been done twice unsuccessfully here, but never at the place we were referred to a few years ago. We’ve had it planned in Cincinnati twice, but didn’t make it due to Sam being Sam. He was sick the first time then needed a major surgery the second time, because essentially, his organs were moving up into his chest which ended up being an over two month stay in the hospital for him. We are ready for this surgery!!!!!

If the surgery works, it would mean eventually, Sam could be decanulated (get rid of trach/breathing tube). Game changer. It makes sense why all of Sam’s doctors wanted to keep him in a bubble until this surgery. If you know me, staying in a bubble is not something I do not do very well, but I have been a good girl.

Of course, Sam had to ruffle everyone’s feathers a little bit. Long story short, Sam’s pediatrician was concerned about a medicine (steroid) he has been on for the intussusception. There is a low risk it will be a problem, but steroids can hinder the healing process. The surgeon from Cincinnati called me to discuss the situation and still feels because of Sam’s complicated history, already having to cancel the surgery twice, and the low risk factor, we should still proceed with surgery, but wanted us to be aware and not have this conversation the day of surgery. Your the expert! What would you do if it was your child?!?! I don’t like to ask doctors this question, but in these situations, I usually do. Everyone agreed, we have Sam in a healthy spot so let’s do it!

So far, Sam has stayed healthy. Prayers for continued health, flawless travel, and a successful surgery for Sam.

Sam Strong!

Faith Over Fear!

Update

Published on March 30, 2022 by Jamie Grant4 Comments

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.

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!

Impeccable Timing

Published on August 14, 2020 by Jamie Grant8 Comments

Sam seems to have impeccable timing. He got sick right before we went to Cincinnati last time. That was six months ago! It’s by far, the longest heathy stretch he’s ever had.

He’s sick right now.

We are suppose to leave on Monday morning for Cincinnati and surgery is scheduled for Wednesday.

A LOT of planning goes into traveling with Sam. We REALLY do not want to reschedule.

We’re waiting on the results from a trach culture. It’s likely tracheitis.

We’ll take some specific prayers right now.

Pray he gets better VERY quickly and we will not have to reschedule Cincinnati. Pray if it is tracheitis, it can easily be treated. Pray we don’t end up in the hospital.

Faith Over Fear.

Sam Strong.

We need this guy back! — Pretty impressive to suction a measuring cup on your mouth for a while. I guess it’s probably not too hard when you don’t breath through your mouth or nose.

Ready, Set, Go!

Published on August 7, 2020 by Jamie Grant5 Comments

The one thing I’ve learned about having a medically complex child is it’s like running a marathon that doesn’t seem to end. I’ve never run a marathon before, but the people I know who have say it’s the hardest most rewarding experience.

I envy the ones who have persevered through 26.22 miles of running. What an incredible accomplishment.

Our Cincinnati dates are set! Sam’s next surgery is August 19th. He will have surgery to try fix why he has the trach (breathing tube). In layman’s terms, they will attempt to sew together the hole in his airway. He’s had this surgery done two times here, but it failed.

We are seeing the best of the best. Our doctors here care enough about Sam to know they are not the ones for the job anymore.

We will go back September 30th for some GI procedures and to check to see if the surgery worked.

I wish I could tell you they would remove his trach (breathing tube) if the surgery works, but he has several more things to be done in order for that to happen.

One thing at a time.

One foot in front of the other.

You know what else I’ve heard from those crazy marathon runners? It’s the call of their name they hear from a distance cheering them on that helps keeps them going.

When it comes to Sam, there are many on the sidelines cheering. Thank you for staying on the sidelines and continuing to cheer us on. You have no idea the impact it’s made.

Sam Strong!

Faith Over Fear!