Tag: Laryngeal Cleft

Procedures Update

Published on 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.

Home Sweet Home

Faith Over Fear

Sam Strong

Miracles Still Happen

Published on 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.

Another Complication

Published on 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 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 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 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!

Procedures

Published on by Jamie Grant3 Comments

Overall, Sam’s procedures went well. When we checked in, there was gal training, the receptionist told her, ”Sam is a frequent flyer here.” He put on the charm for the gal training and she was, of course, taken, ”That smile,” she said. “He just made my day.” Yeah, he does that.

The PTSD unfortunately kicked in way before we saw the purple pj’s. As soon as we walked through the second set of automatic double doors, he knew exactly where we were. Poor buddy, became instantly stressed, but made sure he brought on the charm for a few minutes to show off how, he knew without being told, to step on the scale and then pointed to the place on the wall where he would get measured. He bounced off the scale and stood under the wall chart to be measured. Many familiar faces said, ”Hi Sam!” in the process.

The purple pj’s came into play now. The stress level was pretty high at this point. So thankful for the nurse who thought of and agreed to wait for the Versed to kick in until we put on the dreaded purple pj’s. Later, the anesthesiologist said, ”Just leave him in his diaper!” That’s exactly what we did, even after the Versed kicked in.

“I know what’s about to happen to me and I don’t like it.”

Oh boy do I love and hate Versed all in one. It takes Sam’s stress away almost instantaneously, but also makes him really loopy, which can be a little creepy to watch your baby experience.

The MRI results we don’t know yet and the ENT portion went well. Sam’s ENT is a bit new to us. He was very excited to look inside Sam’s airway as he hasn’t yet seen it. He confirmed Sam has a Type II Laryngeal Cleft. Shoot, it’s still there. Sam’s previous ENT is getting close to retirement and moved to Arizona to help start a new program. Although we were very sad to loose him, the transition has gone very well. His new ENT trained closely, and is on a first name basis with the Sam’s doctors in Cincinnati. Bonus.

We felt like a deer in headlights with the GI portion, but for the most part, we got it all sorted out the next day. Unfortunately, they placed a gj-tube in Sam again, which is a more complicated type of feeding tube then Sam’s had for a while. Sam did not need to be dilated and there weren’t any clear anatomical answers for his GI concerns. We will wait for the biopsy results.

“Glad that’s over.” He didn’t even seem to notice how they snuck on the the purple p.j.’s during surgery.

Now let’s hold onto our seatbelts, and pray nothing holds us back from getting on that airplane next week! The planning and preparation for traveling with a kid like Sam is insane, but what a privilege. Thanks to our friend who nominated us in 2019, the MN Vikings, and the Best Christmas Ever, we’re spending Christmas on the beach!

Merry Christmas!

Wishing you and your family a very Merry Christmas!

Another Test

Published on by Jamie Grant8 Comments

Today at 2:00, Sam will go down to surgery to have another test. They will do an endoscopy with contrast into his esophagus and GJ-tube (feeding tube). They are basically taking moving pictures of where things are going when he is being fed. They are mainly checking for an obstruction.

Here’s the thing, we don’t want them to find anything, but if they do and it’s an easy fix, that would be the best case scenario. Otherwise, we’re back to square one, the guessing game.

I’m not even sure what to ask you to pray for. For now, pray we can figure out what’s going on and it will be an easy fix.

Faith Over Fear!

Sam Strong!

One Hurdle Cleared

Published on by Jamie Grant8 Comments

THANK YOU for all your prayers! After over a SEVEN hour long operation, everything went a-okay.

Exhausting. It’s like you hold your breath for seven hours. Exhale.

And now for the next hurdle…recovery. The next few days will be an even bigger hurdle to jump.

Remember to breathe.

Please pray for no post-operation complications, specifically, no leaking.

Faith Over Fear!

Sam Strong!