Feeding Tube – Superman Sam's Survival Kit

High Hopes, Low Expectations

Published on March 22, 2023March 22, 2023 by Jamie Grant4 Comments

When it comes to certain things in life, I think it’s okay to have high hopes and low expectations. In my opinion, high hopes with high expectations, only leads to disappointment.

I generally try live by this motto, but recently I did not.

Sam was supposed to start school today. He hasn’t been in school since October. I think I was looking forward to him starting school the most. When he came down with what we think is a stomach bug yesterday, I was selfishly pretty bummed. When I shared my feelings with Sam’s dietitian, her response was,

Not selfish in my mind. You want this for Sam and it was also going to be a break for you.

She was right. Clearly in this situation, my hopes and expectations were high. Give yourself grace.

We’re still home and hoping to keep it that way. Although, we are very done with this PICC line, it might just be the thing that keeps Sam from a hospital stay.

Before he started feeling sick, he was on track to be done with the TPN (food/nutrition through his bloodstream) by the end of April, which would mean no more PICC line. His g-tube feedings have been going really well. We are hoping this doesn’t set him too far back and also know he likes to throw curveballs in the mix sometimes.

The prayer is that this is a stomach bug and not an intolerance to his feedings. As a of now, we are confident he has a stomach bug and hopefully he’ll kick it quickly.

On another note, we were able to take a trip few weeks ago. If you remember from our last trip, we had some memories to last a lifetime. On our way home, our flight was canceled. We weren’t able to get on another flight home until the next day. From that, we were each given vouchers from the airline. Abby had a soccer tournament in Florida so we thought we would use those vouchers and try our luck at another trip.

I say trip because when you are traveling with young kids or someone with special needs, it’s a trip, not a vacation. ; ) Although it was another eventful trip, we had a fabulous time.

Here’s a very short version.

On the way there, our flight was delayed two hours, Sam peed through his sweatpants. We had to leave his wet shirt on because he was still hooked up to his PICC line. He pooped right before we boarded the plane, which held the plane up a little longer. Thankfully, we hadn’t boarded yet. He threw his suction machine (basically his lifeline) into the ocean. Red tide hit our beaches, but we had two fabulous days on the beach. Abby sprained her ankle in her second game. Our flight home was delayed an hour and then we sat on the runway for almost another hour. When we got home, we were locked out of our house.

BUT what we remember was absolutely perfect weather and a wonderful time with family and friends. We kept our hopes high and our expectations low. We had some bumps along the way, but we expected some of those and rolled with the punches.

Sam might not be the easiest guy to travel with, let alone leave the house with, but we want him to have the best quality of life and we have chosen to do what we can to give him that and not hold our other kids back despite his complexities.

Prayers Sam can kick this stomach bug quickly and go back to school where he makes people better!

Oh, and Happiest World Down Syndrome Day!

Sam Strong

Faith Over Fear

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

Starting Feeds

Published on January 13, 2023January 13, 2023 by Jamie Grant8 Comments

Besides his meds and water, Sam has not had anything in his stomach for over two months. I think it’s safe to say, his gut has had rest. We are going to introduce feeds into his g-tube (feeding tube) very soon. It will be a very, very small amount, and we will slowly add more as he tolerates it. We are nervous and excited.

Sam has otherwise been doing great! “Eating” through his bloodstream doesn’t seem to phase him much. He’s not in school yet, but he’s been able to go to occupational therapy and speech comes to our house once a week. He keeps himself busy organizing and being on his IPad more than he probably should be.

PICC line dressing changes are getting easier each week. He seems to fight less and knows the worst part is when his infusion nurse has to take off the old dressing. Getting his TPN (nutrition) started has become a part of our evening routine and it feels normal. I will be happy though when the PICC line is gone. It’s not the fastest process in the world and let’s face it, not normal.

Please pray Sam tolerates his feeds and he will not need the surgery his surgeon talked about before Christmas.

I hope you and your family had a very Merry Christmas and Happy New Year! I know I got my Christmas wish and very thankful for it.

Sam Strong

Faith Over Fear

Guessing Game

Published on November 14, 2022November 14, 2022 by Jamie Grant4 Comments

This poor kid. He continues to completely amaze me. He is the toughest little boy I have ever known.

On top of his esophagus being narrow, RSV, and tracheitis, the last three days, he’s had two infiltrated IV’s and intussusception again.

We played a guessing game for a few days with the intussusception. I had a light bulb moment on Thursday morning he was having intussusception again, but you can only catch it when it’s happening. To recap, we know Sam had intussusception in April and again when we were in Cincinnati in May. Needless to say, when we finally caught it on the ultrasound a few days later, I was bummed and felt validated at the same time. Because the intussusception is resolving on its own, there’s not much to do besides gut rest, which Sam’s been doing for the past week.

Thankfully, the first infiltrated IV healed on its own. The second was not as fortunate. His hand puffed up like a balloon to his elbow and because it didn’t heal on its own, they had to treat it. Oh no. This has only happened once in his life when he was a baby. I say ‘only’ because for how many times Sam has had an IV placed, that’s pretty good. I told the nurse, “I don’t want to be in the room when you do it.” I knew what treatment meant. Five needles poked in his little arm at the same time. I didn’t have it in me at that point to help hold him down. Thank you to the nurses who reassured me, it was more than okay for me to step out. We have barely and thankfully avoided another IV since then.

During all the guessing, the hospitalist said, “I always have at least one on the unit. The one who keeps me up at night when I go to bed and the one I think about when I wake up in the morning and that is you this time Sam.” If I had a dollar for every doctor I’ve heard say something like that…

It’s reassuring though. There’s comfort in knowing someone is losing sleep over figuring out your child.

Now we need Sam to start tolerating his feeds. He tolerated the Pedialyte great, but as soon as we introduce formula, he seems to go downhill. In order for us to break out of jail, he needs to be tolerating formula. You’ve got this buddy!

He’s had some pretty rough days, but today was overall good. Praying it’s all uphill from here. Prayers for continued wisdom and discernment for his doctors. Prayers for the intussusception to not come back. Prayers he will tolerate his feeds. Prayers for a restful night tonight.

Sam Strong

Faith Over Fear

The Procedure

Published on November 10, 2022 by Jamie Grant4 Comments

Everything went well with the procedure yesterday. Sam’s esophagus was dilated (stretched) and this time, the doctor was able to pass the scope farther down. The last time, they were not able to get the scope through. Progress.

Generally, when Sam wakes up from anesthesia, he’s a champ. Not this time. Thankfully, he has been fever free and breathing on his own, but is pretty miserable and lethargic. We are hoping this is a combination of the RSV and being put under. It also doesn’t help he his culture showed he has a tracheitis on top of everything, which is not surprising for Sam.

He seems to be tolerating the Pedialyte we started yesterday. We are holding onto that!

Prayers he will tolerate his formula when we start it today. Prayers he will stop spitting and start swallowing. Prayers he will turn the corner today and we can go home!

Sam Strong!

Faith Over Fear!

Prayers to Stay Home

Published on November 6, 2022 by Jamie Grant8 Comments

They were able to schedule Sam’s next procedure with his GI doctor, surgeon, and ENT for November 21st. Unfortunately, his little esophagus is seeming like it won’t wait that long.

After this last hospital stay, Sam’s respiratory doctor agreed it would be a good idea to keep him out of school until his next procedure. I get it. As much as I want Sam in school, I think the risks outweigh the benefits at the moment. We don’t need anything else on top of what’s going on medically.

Sam is really miserable right now, but we are home. His symptoms are indicating he needs another dilation. Hopefully, that’s all it is.

We called the weekend, on call GI doctor. Thankfully, instead of telling us to take him to the emergency room, she got him on the surgery schedule for Monday morning. I cannot tell you how happy I was about that. My heart was really dreading another hospital stay.

For whatever reason when Sam needs a dilation, he doesn’t tolerate his feeds. We are running Pedialyte at the lowest rate possible to hopefully keep him hydrated enough until Monday morning and avoid a hospital stay.

Please pray Sam will tolerate the Pedialyte and be able to stay home until Monday. Pray there is nothing else going on. This poor little boy could really catch a break.

Prayers for our stamina as we are tired. This fall has been hard. Prayers to calm our hearts as questions and concerns are hard to push aside right now.

I’m thankful to believe in a God who loves my little boy even more than I do, and that He will comfort and sustain all of us.

Faith Over Fear

Sam Strong

An Answer

Published on October 21, 2022 by Jamie Grant4 Comments

Sam’s esophagus was barely open (esophageal stricture). This is nothing new for Sam, but it’s been a very long time since he’s needed a dilation. This is the best fixable answer we could ask for. His GI doctor dilated him and wants to dilate again in two to four weeks. Poor buddy.

Praying now he will tolerate Pedialyte. Generally, when Sam is hospitalized, the doctors want him to be successful on his home feeding regimen before we go home. We move very slow to get there. I was able to convince the docs to let him be successful on Pedialyte and let us work on the formula at home. Anything to give us a few less days in the hospital.

Now Sam just needs to turn the corner so we can get the heck out of dodge!

Thank you for all your prayers! Continued prayers Sam will turn the corner, his blood pressure will come down, and that he will not surprise us with anything else.

Faith Over Fear

Sam Strong

We Stayed Home

Published on October 11, 2022 by Jamie GrantLeave a comment

A few weeks ago, we were very close to a hospital stay. Our normally, very busy little boy was laid up on the couch, miserable for a week. He was blasted with all the hardcore stuff we can give at home and needed some oxygen support at night for a few days.

What was the illness that almost landed him a hospital stay you ask? It was likely a cold. That’s right, an illness I wouldn’t blink an eye for with my other kids. We are so thankful we didn’t land ourselves in the hospital. It’s no fun Sam or any of us.

Sam going to school or not, has been an on going discussion in our house. If it were up to Sean, Sam wouldn’t go to school at all. He thinks every time Sam goes to school, he ends up in the hospital. There is some truth to that, but there have been plenty of times we’ve been able to keep him home. Mind you, keeping him home and out of the hospital, is not an easy feat. I see Sean’s point, and also don’t want to keep him in a bubble.

I have to admit, during this last illness, keeping Sam out school crossed my mind a few times. When a common cold debilitates your child for a week, and keeps him out of school for two weeks, contemplating sending him to school or not becomes a thing. Faith over fear.

Until Sam’s doctors tell us to keep him out of school, we will continue to send him. I believe we were designed for human contact. Keeping Sam out of school might mean I am stealing from him what he can give to others. And Sam makes people better.

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!