GJ-tube – Superman Sam's Survival Kit

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!

Looking Up

Published on May 24, 2022 by Jamie Grant9 Comments

As of right now, Sam will not need surgery. Thank you Lord!

The surgeons were pretty convinced yesterday morning Sam would need surgery based off the six ultrasounds he had throughout the night on Sunday. As they came and pressed on his tummy throughout the day yesterday and rested his belly, they became less convinced Sam would need surgery.

Today we started some Pedialyte at a very slow rate in his g-tube. Those of you who know Sam, you read right, I said his g-tube, not his j-tube. After the misery of the getting the j-tube inserted in radiology (not surgery here), surgery pulled his j-tube that evening possibly thinking it was instigating the intussusception. For a few reasons, this could be a disaster or a blessing in disguise.

One reason is the j-tube has often kept us out of the hospital when he gets sick and is not tolerating Pedialyte or formula in his g-tube (stomach). Another reason is that he is currently dependent on his j-tube for half of his daily feedings. The blessing would be, he will tolerate ALL his feedings in his g-tube and not need the j-tube. We would absolutely love only a g-tube.

The surgeon and nurse laughed at me in the middle of the night when the j-tube was pulled and the g-tube was put in when I said, ”Oh it’s so beautiful.” If you know anything about feeding tubes, you can understand my excitement. If you know Sam medically, you can understand my apprehension. It’s going to be a blessing in disguise.

The best news is Sam woke up this morning clearly feeling much better. He’s sitting up and even giving quite a few smiles. He hasn’t made any sounds yet, but I don’t think we’re far from that.

A night and day difference from yesterday!

The hotel we were staying at did not have anymore availability, but we were able to get a room at the Ronald McDonald House here and we able to cancel our flight with no fees.

I’d be lying if I told this is easy, but you know me, I like to stay focussed on the perks. It’s much better for the soul. I also believe we are in the best place possible. Cincinnati Children’s is internationally known for caring for kids with airway and esophageal disorders. It doesn’t take long having a kid like Sam to see that.

Pray Sam will tolerate his feeds, the intussusception has fixed itself, it will not recur, and for NO MORE SURPRISES!

Thank you for walking alongside us in this journey, the continued prayers, and the encouragement. They both go a long way.

Sam Strong!

Faith Over Fear!

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!

We Have an Answer!!!!!

Published on May 22, 2022 by Jamie Grant7 Comments

X-rays showed Sam’s j-tube (the part of his feeding tube that is threaded into his small intestines) is retracted and coiled up into his stomach. As you might imagine, this is very painful. Poor buddy. No wonder why he’s in so much pain and throws up every fifteen to thirty minutes.

At home, radiology does the feeding tube procedure, but it sounds like surgery is the specialty who will do it here. Pray for a quick and smooth procedure tomorrow morning. He gets his feeding tube changed every two to three months and it’s a pretty painful experience for him. This procedure is why he has so much PTSD when he sees an x-ray table. He just had it changed two weeks ago. Poor guy. Hopefully the little bit of morphine he’s on will help.

I feel terrible for him, but this is literally the best possible, fixable answer. This poor guy can barely catch a break. He is the strongest, toughest little boy.

Pray both Sam and I will get some restful sleep tonight and this will be the only complication. We want to hopefully get out of here tomorrow and be able to catch our flight home on Tuesday!

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!

Home Again

Published on April 27, 2022 by Jamie Grant3 Comments

This time, seven days later, we were able to come home. Home sweet home. I was really surprised when the docs rounded that morning and said if things went well during the day, we could go home that evening. Generally, when Sam is inpatient, they make him be successful on formula for at least a day or two before we can go home. He was only on a mixture of half Pedialyte, half formula at this point. They were planning to start full formula later that morning. What?! Do I feel comfortable going home?! Absolutely! Isn’t this why we have home care nursing?!?! Before I knew going home was even on the table, I talked to Sam’s hospital nurse at shift change that morning to let her know I was hoping to leave for a bit to go have an early dinner with my husband and celebrate our anniversary. She assured me they would have someone available to sit with Sam later. We didn’t get to have dinner, but our gift of coming home was far better.

Grateful to a friend for the gift of pressed coffee and heavy cream.

Again, Sam is not back to his normal feeds, but we’ll get there. Poor kid has lost over five pounds in the last month and he doesn’t have any fat to spare!

The prayer now is that the intussusception does not recur. It’s unlikely. We will focus on that. I asked the hospitalist what the threshold to bringing Sam in if he has similar symptoms again. He said, ”very, very low. Intussusception can be very scary…” I’m not sure what he said after that, I only know we better not hesitate if he shows any symptoms. It’s not going to be an issue, so it doesn’t matter.

Because of this second recent hospitalization, more than one of Sam’s docs highly recommended he stay out of school until after his surgery in Cincinnati. Bummer, but I get it. His pulmonologist was planning to have him quarantine two weeks before the surgery, so what’s two more weeks?

As we keep Sam in somewhat of bubble for the next month, pray he doesn’t catch anything. Like his gastroenterologist said, ”Let’s just get him to Cincinnati so he can finally have this surgery!” Agreed!

Thank you for your continued thoughts and prayers for Sam and our family.

Sam Strong!

Faith Over Fear!

Prayers for Today

Published on April 18, 2022 by Jamie Grant2 Comments

Sam is doing great. He hasn’t had a painful episode in two full days. After resting his belly and a heavy dose of steroids, we get to start a very small amount (30 mls an hour) of Pedialyte today! Please pray his intestines will tolerate the Pedialyte.

Living in the hospital is not fun, but we make the best of it.

Easter is one of the only holidays Sam has not spent in the hospital. Sean was in charge of all things Easter this year and he nailed it with the meal and Easter baskets.

I’m SO happy to have all my people here.

As the family was leaving yesterday, Sam started tugging on his IV to try take it off. He knows when the IV comes out, he gets to leave the hospital. Not yet buddy. I’m sorry. If that doesn’t tug at your heart strings, I don’t know what will.

Easter reminds me of hope and new life. I’m incredibly thankful for both.

Sam Strong!

Faith Over Fear!

Admitted Again

Published on April 14, 2022April 15, 2022 by Jamie Grant13 Comments

We have landed ourselves in the hospital again. Ugh. He can’t catch a break.

We spent the entire day in the emergency room on Saturday. After all the routine testing and poking, we left with no answers. Grrrr.

He seemingly got better on and off, but overall was not progressing. We spent the entire day at the clinic/hospital on Tuesday getting more pokes and more tests. His pediatrician was a bit concerned. She called me that evening. She was worried. We still didn’t have any conclusive answers.

I don’t like when doctors actually use the word “worried”. It’s not a word they throw around often. It’s going be fine.

Wednesday morning, he seemed like he was getting better. Later that morning, he took a turn for the worse again. We brought him in at around two o’clock in the afternoon, and after about nine hours of waiting in the emergency department, we finally got a room at two o’clock in the morning. So tired. Coffee can cure that.

Thankfully, we were able to get answers after more poking and testing again in the emergency room.

As we were beginning to suspect, Sam has intussusception. To put it simply, this is when the intestines slide or telescope in and out of itself. As you can imagine, this can be very painful. Poor buddy. Sometimes it can fix itself, sometimes enema treatment will fix it, and sometimes surgery fixes it. It’s going to fix itself.

Okay, to anyone reading and believes that prayer can change things, let the prayers begin!

Pray Sam’s little intestines will fix themselves, he will not need treatment or surgery, and we will have a short hospital stay. This little boy does not need to add more surgeries to his already very lengthy list and needs to be home where he belongs!

Sam Strong!

Faith Over Fear!

Home

Published on April 5, 2022 by Jamie Grant4 Comments

Six days later, we are home. Sam is doing great and back to his happy self. He’s not back to his normal feeds, but we’ll get there. As always, we’re on Sam time.

He, of course, won more hearts during our short stay. The hospitalist said, even when Sam was miserable, he brought a smile to his face every day. “There’s just something about him.” Yeah, he does that to people.

Both Sam and I have developed our own PTSD on this journey. For me, when it hits, it hits hard. It’s a funny thing too. Sometimes I know it’s going to happen and sometimes it comes out of nowhere.

If you’ve ever been to the Minneapolis Children’s campus, there is a skyway from the clinic side to the hospital side. Sometimes there’s music playing and sometimes there isn’t. The music is always the same. I’ve walked across this skyway hundreds of times during hospital stays, going to appointments, going to surgeries, or for volunteering.

It was fairly early in the morning. I walked down to get some coffee. I don’t know if it was the time of day, or that the music playing, or both, but as I walked through, the traffic I was watching seemed to move in slow motion as the sun was coming up and their lights beamed in my eyes. A lump suddenly formed in my throat and tears started to slowly roll down my cheeks. Why am I crying?! Many of the terrifying moments of Sam’s life in the hospital flashed vividly through my mind. Stupid PTSD. I didn’t get any coffee because the coffee shop was closed, but I got a something better after I got back.

Every single hospital room at Children’s Minnesota has a Welcome Book both in Minneapolis and St. Paul. If I’m being honest, in all my time at this hospital, I have rarely looked in this book. Sam was watching Blue’s Clues on my phone. I wanted to know what the Geek Squad hours were so I could rent him an IPad. I knew the Welcome Book would have this information. As I paged through the book, I came to a screeching halt on the resource page.

There he was!!! My sweet, little miracle baby!!! I couldn’t believe it. Now mind you, a few years ago, before Covid, with all my volunteering I had done at Children’s, I was asked if Sam would do a photo shoot for their marketing purposes. Why not. We knew when he did the photo shoot, they could use the pictures for any of their marketing purposes. We signed a waiver saying so. Since then, we’ve had people text us with pictures of Sam on different Children’s ads. But, the Welcome Book?!?! That was was a shocker for me! And it filled my mama heart at the perfect time.