Thankful

I know where we are! This is the street that leads to my house!

We are home. Sam is doing great. I hooked up his TPN (nutrition) by myself for the first time, with the guidance of a nurse specialized with pediatric home infusion. Sean was super overwhelmed with the whole process, as I was after my first teaching.

When everyone kept telling me at the hospital, if I could do a trach, I could do a PICC line, I thought, very try true, at first. The more I processed it all, it wasn’t about the ‘if’, it was about the ‘and’. I realized I was overwhelmed with the ‘and’…a trach AND a PICC line. They were right though, I can do it. With time, it will get easier.

Depending on the day or even moment, we are likely thankful for different things. A friend once told me, her mom taught her to say three things she is thankful for everyday. Yesterday I was thankful for the playful bickering between my family, PICC lines, and my home. I could go on and on about many more things I am thankful for, but I think that summed up the things at that time.

I am overwhelmed with gratitude this Thanksgiving. I hope no matter was you are going through, you can find something to be thankful for.

Today I am thankful for home care night nursing, my faith, and a good cup of coffee in a glass mug. What are your three things today or right now?

From my family to yours, I hope you have a happy, healthy, and thankful Thanksgiving.

Faith Over Fear

Sam Strong

Procedure Today

Sam will have an endoscopy and bronchoscopy this afternoon. This procedure was planned to be outpatient at another location before Sam was hospitalized. The only fact we know right now, is that his ENT (ear, nose, and throat) will be there to do the bronchoscopy. We don’t know yet if another pediatric GI (tummy) doctor will do the endoscopy or his GI doctor. I’m hoping and praying his GI doctor will be able to be in on the procedure and his surgeon, as this was the original plan. There isn’t a GI doctor we don’t know here, and I’m confident in all of their abilities, and there’s comfort in having the one who knows him best in the OR (operating room) with him.

Sam is doing really well and I’m trying to keep him as occupied as possible. We are very thankful for Child Life services. He has way too much iPad time when we are here, but I have to let that go and am very thankful for it. We just might have to do some iPad weaning when we get home.

I had my second PICC line training and am feeling much better about that. When the trainer told me the pump and his TPN (nutrition) will all go into a backpack Sam will wear, she…made…my…year. I was envisioning we would have to follow Sam around the house with an IV pole. Imagine my concern with that and the combination of the Energizer Bunny and the Tasmanian devil. We don’t get that luxury while we’re in the hospital, but boy am I thankful for it when we go home!

It sounds like they are working on getting his TPN down to twelve hours a day. Once he’s stable on the twelve hours for a couple of days, we can break out of jail! I’m hoping and praying this will be before Thanksgiving. High hopes, low expectations.

Prayers for a miracle that all of Sam’s doctors will be able to be at the procedure today. Prayers for wisdom and discernment for whoever is in the OR with him. Prayers we will make it out of here before Thanksgiving!

Faith Over Fear

Sam Strong

The Plan

Ready for surgery!

Sam’s PICC line procedure went well, as we expected it would. He recovered great.

He’s been doing really well, but these four white walls get very boring, very fast for a curious, busy little boy. When the doctors ask what Sam is like when he’s healthy, I tell them he’s a combination of the Energizer Bunny and the Tasmanian devil. They always think that’s funny, but I’m actually not kidding. He’s not quite there yet, but we’re getting really close.

We love when Music Therapy comes and when Child Life brings new toys or other things to try keep Sam busy. We also improvise a lot, like playing in the sink for a while, coloring with crayons on the crib sheet, making a fort with the crib, ‘taping’ the walls with med tape, etc.

Music Therapy soothes the soul.

We’ll be stuck here until I’m done with the PICC line teaching and they get his TPN (nutrition) figured out. I had my first teaching today and will have another one on Sunday. We’ll be out on Monday, but have to go to St. Paul for his procedure that was scheduled a while ago. Then hopefully home Monday night!

That was the plan until it got changed again. Ugg. After that plan changed and my PICC line teaching this morning, I had a moment. Sometimes you just need a good cry. The bad news of having to stay longer and being overwhelmed with going home with a PICC line came crashing on my heart all at once.

In between the moments a friend sent me this.

AS YOU LOOK at the day before you, you see a twisted, complicated path, with branches going off in all directions. You wonder how you can possibly find your way through that maze. Then you remember the One who is with you always, holding you by your right hand. You recall My promise to guide you with My counsel, and you begin to relax. As you look again at the path ahead, you notice that a peaceful fog has settled over it, obscuring your view. You can see only a few steps in front of you, so you turn your attention more fully to Me and begin to enjoy My Presence.

The fog is a protection for you, calling you back into the present moment. Although I inhabit all of space and time, you can communicate with Me only here and now. Someday the fog will no longer be necessary, for you will have learned to keep your focus on Me and on the path just ahead of you.

Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. —PSALM 73:23–24

Show me your ways, O LORD, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long. —PSALM 25:4–5

Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. —1 CORINTHIANS 13:12

Text From a Friend

The floodgates of tears came crashing after reading that. It was exactly what I needed in that exact moment. God continues to sustain me. It’s hard for me not to bring up my faith in these moments, because that is where all of my strength comes from.

The PICC line teaching felt like a lot. The nurses keep telling me if you can do a trach, you can do a PICC line. Very true. I still have another teaching and am incredibly thankful for home care nursing. I’m hoping, and guessing, I’ll feel better after another teaching. I got this!

The new plan is to go from here to the St. Paul campus for Sam’s endoscopy with his GI doctor and surgeon, then a bronchoscopy with his ENT. We have to stay a few nights in St. Paul until the pharmacy gets his TPN (nutrition) figured out for at home. Bummer. They tried to switch the procedure on Monday to Minneapolis, but couldn’t find any open OR (operating room) times.

Every time I have a minute to write, the plan changes! And now another new plan. They were able to get an OR time here so we will not have to transfer to St.Paul!!! Although we will need to be here for four to six more days for them to figure out his TPN (nutrition), not having to transfer to another hospital was the best news!!!

Prayers the plan will not change unless it involves us going home sooner. Prayers they can get his TPN figured out soon. Prayers for continued wisdom and discernment for Sam’s doctors. Prayers for healing for Sam’s gut. Continued prayers for peace, comfort, and strength for us.

Faith Over Fear

Sam Strong

It’s so good to see that smile again.

Thanks for making me better Sam!

PICC Line

Unfortunately, Sam’s feeds were unsuccessful so he will be getting a PICC line this morning for nutrition. We are going on almost two weeks without good nutrition. This is the next best step. Although we’ll be going home with the PICC, it will help us get home a lot sooner.

He had a test (small bowel follow through) a few days ago and it showed reflux into his esophagus, which shouldn’t be happening with the surgery (Esophagogastric Disconnection) he had back in 2020.

The hope is that his little belly just needs a little more rest. If that’s not the case, then he’ll need surgery. He just needs more gut rest.

Prayers for the PICC line procedure to go well. Prayers for the anesthesiologist and others in the operating room. Prayers Sam’s belly only needs more time to rest. Continued prayers for Sam’s doctors to have wisdom and discernment in the decisions they make for him. Prayers for peace and comfort for me in the hospital and my family at home, who are absolute rock stars.

Sam woke up ‘talking’ for the first time in almost two weeks. It was the medicine this mama needed!

Faith Over Fear

Sam Strong

Guessing Game

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

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!

Good News

Sam isn’t doing great, but he’s been off the oxygen most of the day and has no fever. As long as he behaves himself, they will do the procedure (esophageal dilation) tomorrow!

These kind of things are a balancing act when it comes to medically complex kids. It often comes down to a risk benefit analysis. And there are so many factors involved. We are incredibly blessed with the care team Sam has when we are here. It is evident they care so much about our sweet little boy, want to get him better and back home where he belongs.

The smiles are few and far between, but he did sit up a few times today and even played for a couple of minutes. We’ll take it! So far, it’s looking like everyone is wrong about the getting worse before getting better. They are going to be wrong.

Prayers for an uneventful evening for Sam. Pray he can continue to breath on his own and stay fever free. Prayers for the procedure tomorrow and all who will care for him.

Thank you for all the love and continued support for our family. We are truly blessed.

Faith Over Fear

Sam Strong

Curveball

In Sam fashion, he’s thrown us a curveball. They canceled his procedure this morning right before Sam was scheduled to go back to the OR. He tested positive for RSV. They want to see him feeling better and will do the dilation then. In the moment, putting him under anesthesia didn’t feel like the safest option and they didn’t feel comfortable sending him home.

The respiratory symptoms came on very suddenly. A lot happened and changed in a small amount of time, which isn’t abnormal for Sam. I will say, going from an outpatient dilation to being admitted, is a first for Sam. I didn’t pack a bag, but I did bring two matching sandals!

When surgery let the emergency department (ED) know we would be heading that way, the ED told the surgery nurse “Oh, Sam Grant? We know who that is. We will do what we can, to get him in safe and fast!” Mama heart melted. The way everyone has been talking, I prepared myself to spend the night in the ED. As I was about to hit ‘Publish’ on my post to ask for prayers to get a room quickly, they came in saying we were moving upstairs!! We were in the ED for less than two hours!!

Prayers for a quick recovery, a short stay, and no more curveballs. Pray for no aspiration pneumonia on top of what’s going on. Everyone keeps telling us, he’s going to get worse before he gets better. Pray against that! They are going to be wrong. Pray for continued peace and stamina for us.

Faith Over Fear

Sam Strong

He Made It

It was a rough weekend, but he made it. He’s been needing some oxygen support, but we still have room to go up. Nice job, my little warrior.

Now, prayers for his procedure today! Pray for the doctor involved. She knows Sam, but is not his primary GI doctor, which isn’t unusual for Sam when he is having a dilation. Pray for the anesthesiologist and the rest of the team who will care for Sam. Pray for no complications and that we’ll be able to come home today. Pray there is an easy fix and nothing else is going on. Pray for peace and continued strength for all of us.

Faith Over Fear

Sam Strong

Prayers to Stay Home

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

Home

We are home and very happy to be here. What we thought would only be one night, turned into five nights. And of course, as a few of Sam’s doctors mentioned, he threw a curve ball.

Although we know what to expect, you don’t get use to hospital stays. More importantly, Sam is feeling much better. The older Sam gets, the harder it gets to be in the hospital, and all the more excited he gets when we come home.

Yay!!!

We are now hoping he can make it two to four weeks for another esophageal dilation. His GI doctor wants Sam’s surgeon to be there, and Sam’s ENT plans to do a bronchoscopy. If you know anything about the medical world, scheduling three doctors at one time for a procedure is not an easy task. Prayers they can land on a time within the next two to three weeks. We do not want to be in the same situation we were in last week.

Thank you, thank you for all your prayers! They were definitely felt and answered.

Sam Strong

Faith Over Fear

An Answer

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

Nothing Definitive

His CT scan didn’t show much, but his esophagus did raised some concerns. Shocking. GI will do an endoscopy and hopefully ENT, a bronchoscopy, if they can find someone.

Praying for answers, an easy fix, healing, the anesthesiologist, the doctors, the medical staff, a smooth and quick recovery.

Faith Over Fear

Sam Strong

The things that keep a mama going while living in the hospital with her child…

The other day when we came upstairs to the unit from the ED, the first nurse we saw coming out of the elevator said, “Sam, you’re back!” We went around the corner, and another nurse, yells, “Sam!”. I didn’t know whether to cry or smile with endearment. I had both emotions. Overall, endearment though.

The encouraging text.

A nurse who tells the lab tech, “When he’s feeling good, he has the best smile. A smile that will make you smile no matter what.”

The messages of comfort on my posts.

The nurse who had us four days ago, coming to check in on Sam and said, “I’m sorry you are still here. I hope they can figure things out and get you home quickly.”

Watching Sam give the tiniest glimpse of a smile only to his sister on FaceTime.

Other nurses who’ve had Sam in the past stopping in to say “Hi”, check on him, and sometimes me.

I Packed a Bag

Sam has landed himself in the hospital. I was told on Sunday afternoon by one of his GI (gastroenterology) docs to bring him in to be evaluated based off his symptoms. We decided to try make it through the night, knowing what the Emergency Department (ED) might look like on a Sunday evening.

The next morning Sam’s nurse and I headed for the dreaded ED. For the first time in five plus years, I packed a bag before we left. I finally learned, since we rarely end up coming home from an ED visit.

Thankfully, when we walked into the lobby, the green light was on, which means they were not busy. We got back fairly quickly and began all the tests, i.e. IV fluids, labs, x-ray, and ultrasound. By the afternoon we found a seemingly definitive answer. Sam was very blocked up. Poor guy.

My packing skills are sub par. I like to have sandals while I’m in the hospital. You do not want to be barefoot on a hospital floor and when your getting up several times throughout the night to care for your sick child, sandals come in handy. Sam’s home care nurse got a pretty good laugh when I went to switch to my sandals. I was so prepared! I’m blaming it on lack of sleep.

Hmmmm, something’s not right here.

The plan was to keep him for the night, “clean” him out, start feeds, and go home. We’ve never had to do a bowl clean out before. Not fun.

He had a second x-ray because he clinically looked cleaned out, but was still not turning the corner. Bummer. The x-ray showed he was all cleaned out so we hoped it was just taking him a little longer.

Here’s the thing, when you have a nonverbal kid, these kind of things are that much harder. He can’t tell us what hurts or what’s bothering him. We can only use the cues we know for when he’s not feeling good. For Sam, the cues are facial grimacing, low energy, his nystagmus gets worse, and clicking his hips. We want our energizer bunny back.

On day three, he still wasn’t turning the corner. The consensus was try start feeds and see how he does or get a CT scan to rule out anything else.

We got a CT scan and will wait for good news.

Faith Over Fear

Sam Strong

We Stayed Home

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.

Poor buddy.

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.

You make us better.

Miracles Still Happen

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

King Sean and Prince Sam

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...

Okay, this gorilla is pretty cool.

My dad is way cooler than that hippo behind me.

For those of you who don't know sign language, Sam is signing "Daddy". He was telling us the lion was a daddy lion.

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.

Cleaning my feeding tube.

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

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

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

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!