Cincinnati Children’s Hospital – Superman Sam's Survival Kit

Feeds Update

Published on February 2, 2023 by Jamie Grant2 Comments

Sam’s g-tube (feeding tube) feedings are going really well. He’s tolerating the small amounts we are giving him. To put it in perspective, we are slowly giving him about a med cup and a half three times a day. The mixture consists of puréed green beans, infant oatmeal, and his specialized formula. Yum.

We were very excited to finally be able to start the diet Cincinnati Children’s had told us about last May. It’s a diet they came up with for gaggy/retchy kids who don’t eat by mouth. This is Sam to a tee.

Sam’s dietitian (who is the best) has put a lot of work into figuring out this whole thing after collaborating with a Cincinnati dietician only a few times. Everyone here is excited to try it and see the results.

There are many reasons for us to hope he tolerates his feedings, but obviously, we ultimately want to avoid another surgery.

Because we are going so slow with his feeds, it will be a while before we can get rid of the PICC line. As I’ve told you in the past, bathing Sam is a two person job and downright scary. Sam LOVES the water and is constantly trying to drown himself, literally. With the trach, he can’t be fully submerged in water, but because he has no idea the consequence is deadly, he continues to try. With that in mind, washing his hair has become an art for us. Now, add a PICC line on his arm that can’t get wet. Hmmm…

Before last week, Sam hadn’t had a real bath since November. Yes, you heard me right, that’s over two months ago. For all you mamas out there who feel guilty your little ones have gone too long without a bath, don’t. Sponge baths can only go on for so long though.

Bath time with a trach, PICC line, and a feeding tube. We did it.

HALT.

All that writing was before we ended up in the dreaded Children’s emergency department (ED). Sam’s skin at his PICC site was looking fabulous. Last week, we noticed some irritation. As the week wore on, it didn’t get better. Bummer.

After we sent another picture of Sam’s arm to his infusion nurse, she called right away, “I’m so sorry, but I think you need to take him in.” Exactly what you want to hear on a Friday at 4:00. He had zero symptoms so it felt very odd taking a happy little boy to the ED. In a weird way, it felt good to have the folks in the ED see what Sam is like when he’s himself. When we bring Sam to the ED, it’s because we have exhausted all of our home treatments and he’s miserable.

As a medical mama, you miss a lot of your other kids stuff. I’m grateful to the people in our community who are aware of this and send me pics.

Thankfully, we only stayed one night. In Sam’s history of hospital stays, a one nighter has only happened three times, and the first two were day surgeries when he was a baby, because they didn’t quite trust him yet. He was treated for cellulitis at his PICC site and twenty-four hours later, we were on our way home. Of course, everyone was happy to see him on the in patient side.

The next day around 4:30 p.m., Sam fell asleep on the couch watching his iPad. Uh oh. This is not like Sam. I hooked him up to his pulse oximeter (checked his heart rate and oxygen). His heart rate was a little elevated. Shoot, but not too concerned. As his heart rate went up, he started to develop a fever. Crap. Oh, Lord, please don’t let it be sepsis. After a few phone calls to the infusion team and his doctor, we were advised to bring him back to the hospital. Sepsis is always a cause for concern with a PICC, but the risk goes way up when you have a skin infection at the site. We packed ALL the things again and headed back to Children’s. My fear was trying to set in, but I was pouring my faith into my heart.

We checked in, they got his vitals, and we were in a room in record time. The nurse set up the blood culture labs before the doc even saw us. She was ready. The doc came in and ordered the necessary tests. They drew labs and swabbed for all the viruses. Side note. One of the beauty’s of having a PICC is not having to get poked. We waited.

Sam and Dad are sleeping and mama is praying it’s not sepsis.

The doctor came in the room and my heart beat a little faster. At that point, Sam’s labs weren’t concerning, but Sam was positive for Covid. Thank goodness!! He likely picked it up at the hospital when we were there, but who knows! Poor buddy. If you’re wondering why I was so happy about Covid, it’s because I’ll take Covid over sepsis any day. We packed everything up and headed home. It was a four hour round trip and another late night, but record ED time and we got to go home.

Other than a low grade fever, Sam’s rocking Covid so far. Praying it stays the course it is.

Thankfully, through all this, he’s still tolerating his feeds.

We were surprised when he actually left the mask on for a couple of minutes at the eye doctor.

Faith Over Fear

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!

No More Surprises

Published on May 28, 2022 by Jamie Grant4 Comments

Thankfully we did not have anymore big surprises and we are home!!!!!

More to come, but wanted to let everyone know Sam is out of the hospital, doing well, and we made it home.

Sam Strong!

Faith Over Fear!

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!

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!