Christine Pheneger 1/19/24 Christine Pheneger 1/19/24

DECANULATION!!!!!

I think it's actually happening this time. Sam is scheduled to get decanulated (get his trach out permanently) on March 22nd!!!!!! We’ve been told Sam will be decanulated in the Spring many times, but they have never scheduled a date. Someone pinch me. It feels real this time.

Although Sam's had a rough almost month now, we had a really good run and we avoided a hospitalization. This is a big deal for Sam. His doctors wanted him to be able to be successful (stay healthyish) in school for a couple of months before they gave the a-okay to be decanulated. I hate to say this out loud, but before now, Sam had never gone more than four months in his whole little life without a hospitalization. He's seven. Do the math. We are now going on eight months! Okay, now knock on wood everyone.

I know I’ve said it before, but one of the hardest parts of having a special needs child who is also medically complex is he can’t tell us what’s wrong. It becomes a guessing game fairly quickly along with consulting with many different specialties, bloodwork, stool samples, x-rays, urinalysis’, etc. Thank you Lord for home care nursing.

He's on day two of being back in school since before the holiday break. Hoping he can stay healthy and continue to stay in school until the big day.

We are ecstatic and terrified for Sam to get his trach out permanently. It’s sounds a bit crazy, but you get used to having a lifesaving breathing tube after seven years. In our world, it's a safe airway. I watched Sam die four times with one of those times needing more than ten minutes of chest compressions. He is alive because of his safe airway. I think this helps in understanding our fears of having his trach (safe airway) removed permanently.

What does this mean though?! It’s literally life changing for us and Sam. It means…

…Sam can swim.

…we don’t have to get terrified every time Sam takes a bath or is around any kind of water.

…I can drive in a car with him by myself.

…he can go to school if he doesn’t have a nurse.

...he won't have home care nursing, which is exciting, scary, and sad all in one. These strangers become some of your best friends.

...traveling hopefully won't be as much work.

...we don't have to do daily trach cares.

There are so many more reasons, but you get the point.

For us, swimming is at the top of our list and I know it will be at the top of Sam's too. Sam LOVES the water. We joke that every time we give him a bath, he tries to kill himself, quite literally. His new thing is to try to lay down in the tub. When he realizes I'm holding his arm a bit tighter, moving quickly to pull him up and away from water, and clearly anxious, he laughs and does it more. Okay, bath time is over now. I can't imagine giving him a bath and not having one hand on his arm the entire bath time and not feeling nervous the whole time. Swimming lessons will definitely be in his future. Is there swimming in the Special Olympics?!

As always, we hold high hopes and low expectations for March 22nd. He will go under anesthesia for the umpteenth time and his ENT will check for a third time to make sure his Laryngeal Cleft is still intact, meaning the surgery he had in Cincinnati worked and there is no hole in his airway. If that's the case, which it will be, his ENT assured me I would get to do the honors of taking out his trach. I have done this a thousand times, but have always quickly put a new one in. This time, I won't.

We will stay one night in the Pediatric Intensive Care Unit and go home the next day if all goes well, which it will.

It’s been a bit since my last update. No news is good news, right? Here are a few things we’ve done since August.

Trying to get Sam to look when we're taking a picture is a very tall order. ; )

Love getting to watch Abby play. Thanks for the pics Beth.

Got to take these two girls to the Lumineers concert. Abby's birthday present from April.

Where does the time go? Abby (Sophomore), Will (Junior)

Here's what happens when there is no nurse and mom wants a few more minutes of sleep. Clothes are off and his trach is out. At least his feeding tube is still in.

Annual cooking making day was a success.

He wouldn't look at Santa, but as you can see he has a huge smile on his face.

As always Sam Strong and Faith Over Fear!

Christine Pheneger 12/1/22 Christine Pheneger 12/1/22

Procedures Update

The excitement of breaking out of jail made me forget to update on the procedures Sam had while he was still in the hospital. Obviously, from the last post, he recovered very well.

His GI doctor dilated two different areas of his esophagus. Because Sam’s esophagus is not attached to his stomach, it’s been hard to scope the inside of his tummy. She was able to take his feeding tube out, and although it wasn’t easy, she got the scope through, and was able to take a look. Not surprisingly, his tummy looked rough. She took biopsies. We are still waiting on the results, but generally, no news is good news. Probably too much information, but she also scoped his rectum and everything looked good down under.

His ENT gave the GOOD NEWS that his laryngeal cleft is still repaired and his airway looks good. Or best news. We are on track to work on decanulation (getting his trach out) in the the Spring!!!!!

We are settling at home with a PICC line. Sam is doing great, but his poor skin is a mess. We discovered he’s allergic to the dressing. They are now doing dressing changes every two to three days, instead of weekly, and prescribed him a topical steroid.

The more frequent dressing changes are a drag because three of us have to pin him down for a good ten to fifteen minutes to keep his arm still and sterile. Sam might be a little guy, but he is very strong and flexible. I think the scariest part of a PICC is the the importance of keeping it sterile. The risk of infection is low, if you’re doing all the right things, but a bloodstream infection is serious.

Thankfully, I am much more comfortable with all things PICC line, except for the major frustration of getting air out of his TPN (nutrition) infusion before I hook him up at night. Air in the bloodstream, not good. I’m not one to use curse words very often, but they’ve been slipping out this past week more than I would like to admit. The infusion nurse told me, in time, I will get it. Hopefully by that time, he won’t need the PICC anymore!

The plan is to give his gut another week of rest and then talk to his GI doctor about possibility trying feedings again.

Continued prayers for no PICC line complications and patience for me with starting Sam’s infusions.

Faith Over Fear

Sam Strong

Christine Pheneger 11/21/22 Christine Pheneger 11/21/22

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

Christine Pheneger 10/20/22 Christine Pheneger 10/20/22

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.

Christine Pheneger 7/12/22 Christine Pheneger 7/12/22

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.

Christine Pheneger 6/30/22 Christine Pheneger 6/30/22

More on Cincinnati and Update

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...

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.

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!

Christine Pheneger 11/1/20 Christine Pheneger 11/1/20

Peace Even When...

On top of everything else going on, Sam developed a cold. Poor buddy can’t catch a break. It has been a rough few days. Who am I kidding, it’s been a rough thirty-two days. To be on the safe side, they did a nasal swab and trach culture. The only infection that showed is rhinovirus, aka, the common cold. Big deal, you might be thinking. At least that’s what I thought/think when my other kids caught/catch a cold.

For Sam, the common cold is rough. He’s miserable. We are constantly suctioning his trach (breathing tube). He retches a lot more because it’s hard for him to control all the extra secretions. He is also at a much greater risk for aspiration, pneumonia, and/or bronchitis. That’s where the hard work comes in for us. With continuous monitoring and safe suctioning, we can prevent these infections. Thankfully, he usually gets through the cold without complications, but it’s not easy.

Sam’s next dilation is scheduled for tomorrow at 2:45pm. As of now, he’s still scheduled. The doctors today, said if things get worse, he will have to get rescheduled. Pray for a quiet, restful night, for the cold to be short lived, and for him to be healthy enough for surgery.

Unfortunately, we are still suctioning blood from his trach. In the morning, ENT will do another bronchoscopy. This way, if they find anything, they can take care of it in surgery tomorrow afternoon.

On a good note, he is up to sixteen milliliters per hour with his feeds and we have not had to stop them!

Although this is hard, and trust me, I have my moments, for the most part, I am okay. Even in all this chaos, I am at peace. I truly believe, the more you lean on and trust in Him, the more you will feel an overwhelming peace even in the chaos.

Christine Pheneger 10/22/20 Christine Pheneger 10/22/20

An Answer, With...

an easy fix! Thank you Lord!!

Sam needed a dilation. This is what we were all hoping for and the best case scenario. His esophagus was pretty much shut. A thing Sam likes to do after surgeries and in general. They didn’t dilate all the way being only three weeks post-op. Later, when he heals more, if he needs another one, we can come back for that. And that, is a one day ordeal, which is something we are accustomed to in our world.

He will rest tonight and we will slowly introduce feeds tomorrow. If all goes well, we will be here a bit longer, but will get to leave the PICC line here. Please, let us leave the PICC line here, Lord. Being on “PICC line watch” is really hard and especially hard with very busy little boy.

We also figured out why the blood is coming from his trach (breathing tube)! This morning, before surgery, ENT did a bronchoscopy. The blood is from suctioning past his breathing tube, something that shouldn’t be done too much. His airway is irritated, but it will heal.

Believing for no more surprises and the feeds to go well.

Thank you again for your prayers! Keep em’ coming!

Faith Over Fear!

Sam Strong!

Christine Pheneger 5/3/19 Christine Pheneger 5/3/19

Next Steps

Where do I begin?! Ya know that whole mentally preparing myself thing I've talk about? I don't think I did enough of that this time. Or maybe we just got a lot of overwhelming information. Or maybe it gets harder and harder to send Sam off to surgery as he gets older and more aware of what's going on. Or maybe it's a combination of both. Or maybe sometimes I have my moments.

He was super upset after surgery until he saw his mama. He fell asleep instantly, cuddled in her arms.

Sam is definitely starting to figure things out. He does just fine until everyone starts coming in to go over things. This time his anesthesiologist said he was pretty feisty when they brought him back to the operating room. Poor buddy. After looking at Sam's history, the anesthesiologist said "Wow, he's got quite the history. It's v.e.r.y rare a kid makes it to three pages." We all joked saying Sam should get a medal or trophy or something. I could have laughed or cried. I laughed. Laughing is much better for the soul.

Trying to explain everything and making it make sense to the general public is tough. I'll do my best.

ENT...

Because of the GI findings, Sam's ENT has decided to stay in the background for quite a while. He wanted us to talk to Sam's pulmonologist as he said Sam's airway is really red and inflamed. This is likely due to Sam's most recent illness, which is a whole other story. Thankfully, after looking at the pics, Sam's pulmonologist wasn't worried. The good news...the small part of Sam's airway he fixed last month was successful!

GI...

We got answers, but not the greatest news. It's a lot of info, but in short, his GI surgeon is going to talk to docs from Boston as they are stumped and not sure what to do next. After looking, they discovered his tummy surgery came undone or unwrapped. The surgery, last done in November of 2017, that's failed three times now. It's likely, the unsuccessful surgery is due to Sam's violent retching episodes, which in turn wreak havoc on his already stressed esophagus. Either way he'll have another open surgery sometime this summer. Open surgery...yuck. They will do some more tests and dilate his esophagus again in four weeks. The good news...he once again recovered beautifully!

Once again, we wait...patiently.

We are used to getting bad news and the unknown. Hope is hope, just that, and it's a phenomenal thing. We cling to hope.

"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."(2 Corinthians 4:8‭-‬9 NIV)

Christine Pheneger 4/28/19 Christine Pheneger 4/28/19

Here We Go Again

Sam will go to surgery again tomorrow (Monday). His GI surgeon and a GI doctor will stretch his esophagus again for the twenti somethingth time. His ENT will look to see if the sutures stayed intact on the bottom part of his Laryngeal Cleft, or the hole in his airway. His ENT has decided only to look and see if the surgery he did last month worked or not. Both Sam's ENT and GI surgeons are going into this, hoping to formulate a plan based on their findings.

There are SO MANY things I could worry about with Sam. Of course, I travel down that path sometimes, but it gets me nowhere except stressed and fearful. There is SO little we can control. I know we are doing everything in our control, the rest is out of our hands. We choose to let go, and let God. When that truly happens, I can tell you from experience, the stress and fear factor quickly go away.

Pray the surgery done last month on Sam's airway was successful. Pray for Sam's surgeons, anesthesiologist, and anyone else caring for him. Pray Sam will recover quickly, his docs will be able to formulate a good plan, and we will get some answers. Pray for the rest of us too. I joke, Sam recovers faster than I do when he has surgery. As you can imagine, surgery days are pretty mentally and emotionally exhausting. As always, thank you for keeping us and our Superman Sam in your prayers.

Christine Pheneger 3/18/19 Christine Pheneger 3/18/19

When Bad News Almost Feels Like Good News

When bad news means fixable answers to questions you've been pondering, about your child's health, sadly, it almost feels like good news.

I have to start by saying, we didn't even get asked for Sam's name when checked in at the surgery desk. I don't think that was the first time. Many of the staff in surgery are on a first name basis with Sam. It is the most lousy and endearing feeling all in one.

Today was not so great, but it could be much worse. Sam's ENT told us, "Most kids go one, two, and maybe three, but Sam goes one, two, three, four, five, six, seven, eight, nine, ten..."

In order for me not to write a book, I can tell you...

...Sam's last surgery did not work. They did part of the surgery, but the rest will not get done until all the GI (tummy) stuff gets figured out.

...his esophagus needed to be dilated, AGAIN.

...they couldn't check to see if his nissen surgery came unwrapped, which would be for the fourth time, because they weren't able to pass the scope through. They will likely do other testing to check on this.

...we will wait to see what the biopsies tell us.

...Sam will likely get a more complicated feeding tube placed when they dilate his esophagus, AGAIN in four to six weeks.

Although there was quite a bit of heavy news, everything is fixable and that is the good news. The other good news is we were able to find answers to the elcalated retching and aspiration episodes. What's another surgery when you've had more than thirty and you're not even three years old yet?! I'm close to forty and I haven't even had one people!

Even more good news, Sam recovered amazingly, once again. He makes anesthesia look easy. He makes surgery look easy. He makes hard stuff look easy, period. Maybe he really is Superman. He's our Superman, that's for sure.

"Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.” James 1:2