Christine Pheneger 4/16/24 Christine Pheneger 4/16/24

Naked Neck Club Update

Things are going fantastic so far. Sam is rockin' the Naked Neck Club. The hole (stoma) in his neck is still fairly open, which means he is still breathing out of his neck, so we are not out of the woods yet, but it has shrunk a lot. Still can't wait for the day that bathtime is not terrifying for us. We are still doing trach cares, but they are taking WAY less time than we are accustomed to. Not suctioning him is definitely hard to get used to, but I don't think any of us miss it. All good things!

One of the things we have noticed the most is Sam's voice is a little louder and the things he tries to say are a bit more pronounced. He is definitely experimenting more with his voice and it's a beautiful thing.

Next week, we will see his ENT and he will determine if Sam's stoma (hole) in his neck needs to be stitched. At this point, it is very likely. This isn't surprising for how long Sam had his trach.

As mentioned, Sam's spinal MRI showed some things that need further investigation. One of the things they were looking for, but thankfully did not find, was a tethered chord. He will have a colonoscopy, endoscopy, and barium enema to further investigate. This could be some answers to questions we have had for a very long time. Only hoping and praying the answers are easily fixable.

This guy doesn't seem to catch a break, but he sure handles it all like a champ. If only we could all look at life like he does on a daily basis.

The Easter Bunny really has to get creative when you have a kiddo who doesn't eat anything by mouth. : )

Someone was into finding Easter eggs for the first time!

One of Sam's home care nurses who has been with Sam since he came home from the hospital as a baby, had her 1st baby. What a special moment.

Christine Pheneger 3/23/24 Christine Pheneger 3/23/24

Home

Only spending one night in a hospital feels a little weird, but man does it feel good. We got home with a naked neck early this afternoon. I cannot stop running my hands over his bare neck!!!

Sam had a fantastic night. He decided to make his already exhausted mama more tired and stayed up WAY past his bedtime, but I wasn’t surprised. His oxygen was 100% for most of the evening. It did get lower throughout the night, but nothing that concerned me or the medical staff.

Doing his nebulizer treatments is a new thing for us. He thought it was pretty funny to have the mask over his nose and mouth and not over his neck. He did such a great job. I was so proud of him!

Not suctioning his trach site is another new, but great normal. He’s doing a great job of clearing his own secretions. Sam has always had a good, strong cough, and we are thankful for that.

Sam’s MRI did show something that will need to be addressed, but it was not our focus for this hospital stay. The good news about it is that it gave answers to something that we’ve been looking for a LONG time. Prayers for Sam’s doctor’s and our discernment on this.

Prayers for our first night being at home. Sean and I are a little leery because we are not used to things going smoothly, but that doesn’t mean they can’t! We are SO ready for this new chapter!

Thank you so much for your continued support. It warms our hearts to read your messages and we feel all the love so much.

Faith Over Fear

Sam Strong

I can’t eat the doughnut, but I can lick it!

Christine Pheneger 3/22/24 Christine Pheneger 3/22/24

Naked Neck Club?!?!

The day started out as a normal day in our house getting ready for a surgery/procedure for Sam. It’s routine for us. It always feels a little different when Sean is coming. If Sean takes off work to come instead of a nurse, that means the surgery/procedure is a much bigger deal to us.

Sam’s PTSD kicked in as soon as we entered the hospital doors. He continually shakes his head, waves his little pointer finger in the air and says, “Uh, uh!” As you probably guessed that means, no. He does a somewhat fake cry, grabs my legs, and burrows his head into my stomach. He lifts his head, points to his arm, grimaces, and says, “Oke.” That means poke. Poor, sweet boy knows exactly what’s coming. The only thing I can do is hug him and tell him, I’m sorry.

I have watched my son roll away to surgery over 70 times in his short life. Watching your child roll away to an operating room does not get easier the more you do it. If anything, for me, it gets harder. I miss the days that he doesn’t remember what’s about to happen.

BUT, today was going to be a good day! And so far, it has been!!!

About an hour after he rolled away, his ENT came to give us the great news that his airway looked good!!! He told us he would meet us in the PICU when Sam was done with his MRI and WE would get the honors of taking out his trach! Taking out a trach is not a big deal to us. We do trach changes every two weeks and sometimes more when it comes out accidentally or purposely. Naughty Sam. It’s the leaving it out part that is completely new. Gulp.

We waited about another hour before the MRI was done. The nurse came and got us from the surgery waiting room and we went up with Sam to the PICU.

He’s always a little groggy after a procedure, but it doesn’t take long for him to perk up. We got situated in our room and waited for his ENT.

“Are you ready?”, he asked when walked into the room. Everything feels a little blurry after that.

It’s been about eight hours since Sam joined the Naked Neck Club and he is doing great. If he does well overnight, we will go home tomorrow. That feels like scariest and most exciting thing.

It generally takes about two weeks for the hole to fully close. There’s a 50/50 chance it won’t close on its own. In this case, they will stitch it shut. Because Sam’s had his trach for as long as he has, it’s more likely they will have to stitch it.

This has been the weirdest experience I have ever been through. It's so surreal. I don’t even know what my emotions are.

Please pray Sam has a good night and even more for the next couple of weeks while we live at home without a safe airway. You’ve got this buddy!

Sam Strong

Faith OVER Fear

Christine Pheneger 3/15/24 Christine Pheneger 3/15/24

Reflecting

With Sam’s decannulation approaching next Friday, I am filled with emotions. As I look ahead with excitement at the future post-trach, I can’t help but also reflect on the last seven years. Looking back on our journey, I came across this blog I wrote that I wanted to re-share as encouragement to those who are adjusting to your own “new normal” or know someone else who is.

I am so grateful to all who have supported us along the way both in our personal journey and in our efforts to support others through S3Kit. We appreciate your prayers for Sam next week!

Click the button below to read the article published on the Children's MN Mighty Blog.

What I Hope People Would Understand About Our New Normal

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 8/23/23 Christine Pheneger 8/23/23

Loving Summer

Overall, Sam is doing really well. He’s been rid of the PICC line since June! His g-tube feedings are running eighteen hours a day, which is kind of a bummer, BUT way better than having a PICC line.

He’s been happy and healthy. Healthy.

Summer is usually good to Sam. He generally stays out of the hospital and virus free. We love summer. He loves summer.

I don’t eat, but I love tasting ice cream!

We have had two doctors tell us, in order for Sam to get his trach (breathing tube) out, he needs to be successful in school for a couple of months. For them, that means stay out of the hospital and off all the hard core treatments when he does get sick. You’ve got this buddy!

He recently had his lab appointment for his new specialty, endocrinology. The poor kid has so much PTSD. He knows as soon as we go through the double doors something bad is going to happen. He did great though. After the poke, he was fine. They drew labs every 15 minutes for an hour. Results will take a couple weeks. As always, we will patiently wait and hope for whatever is best for Sam.

For now, we will continue to enjoy what we have left of this good, busy, beautiful summer. And pray he can start school and stay in school.

Sam Strong

Faith Over Fear

Christine Pheneger 6/18/23 Christine Pheneger 6/18/23

The Good Cry

We all need a good cry once in a while. It’s medicine for the soul.

I wish I could tell you no news is good news and things have gone fabulous since Sam's surgery.

I want to tell you Sam doesn’t have a PICC line anymore and his g-tube (feeding tube) feeds have gone flawlessly.

As you’ve already probably guessed neither are the case.

In the past six weeks, this poor kid has put under anesthesia three times, one being an esophageal dilation, and two other times because his PICC line got misplaced so he needed a new one. He’s fought illnesses off and on several times. He seems to get to a certain point on feeds and then can’t go any further. He’s had all the tests imaginable to try figure out what’s going on.

We were hopeful he would be able to make it to school for the last month, but he only made it a couple of days.

It has felt like the hard days outweigh the not as hard.

Last week, after a really hard morning by myself without a nurse, with a forty pound little boy who developmentally doesn’t get the concept of sitting still on continuous fluids until he could get his PICC line replaced and poop everywhere, I felt like I was hanging on by a thread. Since Sam's had this PICC line, we've had to cut his shirt off more than once because of poop everywhere. In the moment, getting scissors was not even an option.

You know when everything compiles and you feel so overwhelmed, you feel almost frozen? I slightly panicked not knowing what to do. I stopped and said out loud, “Lord, I don’t even know where to start right now or what to do. Please walk me through this. Please keep his line free from any poop or infection!” I’m not really even sure how I did it, but I did. Thank you, Lord.

After I finally got things mostly cleaned up, I got Sam on his iPad and just sat on the couch next to him feeling overwhelmed and exhausted not just from that morning, but from all the things. Shortly after, my friend and her daughter walked in the door. As my friend walked up the stairs, just seeing her, I completely lost it, blubbering like a little baby.

We hadn’t talked in the past week, so she had no idea about all the tests, Sam getting really sick AGAIN and needing another PICC line AGAIN. “On no, what is going on?!”, she exclaimed. She sat down next to me, hugged me, and let me cry. I composed myself and gave her the latest updates. She knew all I really needed was a good cry. I felt much better after.

Currently, Sam is doing great. We are back to square one on feeds through his g-tube, but so far so good. He has added a new specialist to his already lengthy list. We are thankful for entire week of no surprises.

I have had a few people, okay several, call us crazy since we recently added a new family member to our household. Meet Hank. I’m forty-three years old and have never had a dog before, let alone a puppy. I’ve been told puppies are a lot of work. I don’t know if I have a skewed perspective because of Sam, we got a good one, or both, but Hank has not been all that much extra work and has been the best addition to our family.

Here's to the good cry and replenishing the soul. We all need it sometimes. As long as we are able to pick ourselves up and keep moving forward, the good cry, once in a while will only make us stronger.

Sam Strong

Faith Over Fear

Christine Pheneger 5/2/23 Christine Pheneger 5/2/23

Home

It took two attempts to clear Sam’s PICC line, but they were able to do it. Thank you Lord.

We were able to come home today as planned! I packed for a week and mentally prepared for longer. It feels so good to be home. Fortunately and unfortunately we were able to leave sooner because Sam is on TPN and has his PICC line.

We will give his tummy time to heal and then the real test begins. When we get the okay, we will start feeds very slowly through his g-tube (feeding tube). He is going to tolerate feeds and the PICC line will be a thing of the past.

Sam Strong

Faith Over Fear

Christine Pheneger 5/1/23 Christine Pheneger 5/1/23

Today Was a Good Day

Day one post-op was not great, but anyone who has a major surgery would not be great on the first day. He had a really rough first night. Sleep was at a bare minimum for both of us. He needed a lot of suctioning (his trach) and had a lot of retching (throwing up).

Day two was rough with some good sleep periods, but he was miserable when he was awake. Overall, he slept good that night. Progress.

Day three he showed a glimpse of hope in the morning. He melted some hearts with a few smiles. He went downhill fast later in the morning. At first, it looked like a curve ball, but then as I payed more attention to his symptoms, a light bulb went off. Intussusception. Ugh. Poor guy. I prayed the intussusception would resolve on its own so we wouldn’t have a real curveball.

We tried so hard to stay away from the morphine, but by late afternoon I caved per his nurse’s gentle nudge of encouragement that’s it’s probably a good idea. It was a good idea. It definitely helped. Intussusception comes and goes in waves and is apparently very painful. Your small intestines are not suppose to telescope in and out of each other. The only thing to do is wait and hope it resolves on its own. With a few more doses of morphine that day and throughout the night, he slept really well. It was looking like Sam would hit this curveball out of the park.

Day four, he woke up happy and sat up for the first time! He was playful in bed the whole morning and had fun with music therapy. Music therapy. It gets my heart every time. She started singing the “Hello” song and the tears dripped down my face like a faucet. I couldn’t control them if I tried. It’s the same song I’ve heard the last six years from several different music therapists. Moments of Sam’s little life flash through my mind like a trailer for a movie. I feel every emotion possible in a matter of seconds so deep in my soul, I can’t control the lump in my throat and the tears that follow. After it’s over, they are good tears, the ones that have to happen once in a while to keep me going. I’m thankful for a God who meets me right where I am at.

In the afternoon Sam got a break from all his cords. I decided to try get him out of bed. He didn’t want to. He sat on my legs as I knelt down to the floor, but once I stood up with him and held his hand, he had an ear to ear smile and walked to the door. He played in the hospital playroom for about an hour before he tuckered out. My heart was full and I know his was too. He fell asleep early tonight. Overall, it was a great day.

Here comes the curveball. Sigh. It’s 9:30pm and the nurse is about to start his TPN. I take an overdue shower while there is someone in the room with him. I step out of the bathroom and a few moments later I hear, “It won’t flush.” Crud. A PICC line that won’t flush is not a great thing to hear. Now we hope we can clear the line that is likely blocked by a formed blood clot. The good thing is that it’s highly unlikely we won’t be able to clear the line.

So, prayers the PICC line will clear and flush easily.

I believe it will and I’m also very hopeful Sam will sleep good tonight and we will get to go home tomorrow.

Sam Strong

Faith Over Fear

Christine Pheneger 4/28/23 Christine Pheneger 4/28/23

Done

Holding our breath. Surgery is done and it went really well. It took a little over three hours. Exhaling. His surgeon crossed both fingers in the air and smiled as he walked out of the room to let us know things went well. His surgeon has been with Sam since he was a baby. Sam has a very special place in his heart.

Sam came out of recovery very sleepy and when he has been awake, is in a lot of pain, but overall, doing really well.

Now holding our breath again. Here’s the part I have to speak away my fears. Here the part where Sam likes to throw curve balls.

Just breathe. He is not going to have any complications. He is going to sleep well tonight. We are going to keep his pain controlled. He is going to recover quickly.

Thank you for your continued prayers.

Sam Strong

FAITH OVER FEAR

Christine Pheneger 4/19/23 Christine Pheneger 4/19/23

More Hurdles

It’s been eventful. The x-rays on Sam’s hips I asked for prayer for showed no change from the x-rays he had in January. Whew. Even though the x-rays showed no change, they were really concerned about the limp he had developed after being sick. Hmmm.

When we saw his orthopedic doctor a week after his x-rays, his limp was gone so she was not concerned anymore. She was convinced he had Transient Synovitis. What the heck is that?! Apparently it’s a very common cause of hip swelling and limping in kids after a viral infection. I have four kids and this is the first I’ve heard of it.

The first line of defense is ibuprofen to help with the swelling. Of course, Sam can’t have ibuprofen. Ibuprofen is on his allergy list because of his chronic kidney disease diagnosis. In this case, his nephrologist okayed the seven day course of ibuprofen. I realized/remembered a few days in, you’re not suppose to have ibuprofen before surgery. Shoot! His procedure to see if his esophagus was strictured (narrow) was only a few days away. Oops. So many things to remember with these kind of kids! We stopped the ibuprofen until after his procedure.

His procedure went well. Unfortunately, his little esophagus was very strictured. I was told I must feel validated. I’m not so sure those were my feelings, but I am glad the procedure gave Sam relief and I wish it didn’t take a procedure to fix the issue.

The way he bounces back from sedation amazes me. I asked a nurse if this is normal and her response was a quick, definitely not. He walked out of that surgery center like nothing even happened.

He made it to school two days before things went downhill again. Per Sam’s home care nurses, he was greeted with the sweetest welcome back from his classmates, teachers, and many others. He hasn’t seen them since October. They were elated to have him back. Many of the kiddos colored Lego Superman pictures for him and wrote the kindest notes that would make anyone choke back that lump in your throat you can’t control when you feel happiness and sadness all in one.

Our Easter was nice and low key with family. The rest of the week was not so low key. We spent two nights in the hospital. Poor guy was miserable. His little esophagus was very narrow again. It’s only been a week and half since the last one! This poor kid! He had another esophageal dilation and we went home the next day with a happy boy.

There are many missing details, but it is clear Sam will need another surgery to hopefully fix the underlying problem. Something has to be done. Feeding intolerance is an issue. We had been working so hard on trying to get rid of his PICC line. We had made so much progress on his feeds. Now we are back to square one until after his surgery on 4/28. Until then, he will only be on TPN (bloodstream nutrition/food) and be out of school until he has recovered from surgery.

I loved the response I received regarding his recent events from one of Sam’s hospital nurses he had when he was a baby.

Dude definitely loves a good comeback story! The ultimate miracle.
ICC Nurse

Another. Major. Surgery. Ugh. As I said, when it comes to minor surgeries/procedures, Sam is a rock star. When it comes to major surgeries, he doesn’t have a very good track record.

This time is going to be different. This time he will not throw any curve balls. This time he will recover quickly. Thank you for believing these things with us. I can’t wait to tell you the good news a few weeks from now.

Sam Strong.

Faith Over Fear.

Christine Pheneger 3/30/23 Christine Pheneger 3/30/23

Hurdles

What we think was a stomach bug, hit Sam hard. He was miserable on the couch for five days. Stomach bugs do that to Sam. If it weren’t for his PICC line, he would have definitely had a hospital stay. We are thankful we were able to stay home.

As he regained strength, we were hopeful he would kick some of the symptoms still lagging. He has been mostly happy this week, but will not swallow, is continuously spitting, and retching a few times a day. All signs seem to point to a strictured esophagus. Sam has had sixty plus esophageal dilations and almost every one that wasn’t already scheduled was a phone call made by me and then a phone call from the surgery scheduler, who we are on a first name basis with, to schedule the procedure to stretch his little esophagus. I’ve been wrong. One time. And one might argue, I wasn’t completely wrong, there was a much bigger problem in that situation.

After many phone calls back and forth, we received one that gave me a sucker punch in the stomach. After Sam’s GI doctor and surgeon discussed things, they think it’s best for Sam to have the surgery that was discussed back in December. But, I thought we would only do that surgery if Sam’s feedings weren’t going well?! He had a stomach bug, not feeding intolerance! And now, we’re fairly positive he needs a dilation! Why are we jumping to the surgery!? Us, along with Sam’s home care nurses had a lot of questions.

All this being said, he has not been able to go back to school yet. Boo.

I felt icky. I don’t want him to have another major surgery. Why more pain and suffering for my sweet, innocent little boy? That afternoon, I felt scared. I felt anxious. I felt sad. I felt worried. I felt mad. I felt frustrated.

That evening, with my brain and my heart in a fog, I went through the motions. I made dinner, cleaned dinner up, started Sam’s TPN, did Sam’s nebs, gave him his evening meds, and drove to and from soccer. Most of these are things I enjoy doing. I appreciate I get these opportunities and am thankful for them. Things were weighing me down. It’s not fair he has to go through all this!

That night, I laid in bed and poured my heart to the Big Man Upstairs. I was reminded of some of His promises. He’s got this. His plans are better than mine. He is for Sam, not against him. The more I was reminded of these promises, the lighter I felt. Surprisingly, I slept very well that night.

We waited the entire day for the phone call to explain things more. I didn’t go through the motions. I wasn’t worried about the phone call that was coming. I felt peaceful. I felt calm. I felt grateful.

When the phone call did come later that afternoon, some of our questions were answered. They said Sam would be scheduled for a dilation (esophagus stretch) next week with his GI doctor and surgeon, and things that didn’t make sense, made more sense now. We are still unsure of some things, but will be able to ask more questions next week.

We were very thankful they were able to schedule the procedure for Monday morning. Prayers everything goes smoothly and more of our questions will be answered.

Without going into a lot of detail, prayers for x-rays Sam is having tomorrow morning on his hips. We feel it is something they are being overly cautious about, which isn’t a bad thing and don’t want to be wrong about our feelings.

These are only hurdles. Hurdles can be jumped over, kicked over, and tripped over, but we can still get back up a keep moving forward. And that is exactly what we will do.

Sam Strong

Faith Over Fear

Christine Pheneger 3/21/23 Christine Pheneger 3/21/23

High Hopes, Low Expectations

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.

Trached kid playing is the sand. Sand in the airway, not good. Shhh...

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

Christine Pheneger 2/20/23 Christine Pheneger 2/20/23

Prayers Answered

There will be no positive blood culture. Check. Sam will kick this virus quickly. Check. There will be no more seizures. Check. We can continue to manage his fevers. Check. He will be ‘healthy’ enough for surgery tomorrow. Check.

Each specific prayer request was answered. Thank you! They were able to get Sam on the surgery schedule earlier in the day than planned, and we were able to discharge that night, which meant a four day stay. We'll take it!

Adenovirus. What is it you ask? I had quite a few people asking me about this. The reason you've likely never heard of it is because it's not something you'd probably go to the doctor for or bring your kids to the doctor for. It's not a typical test that would be run either. Symptoms are generally mild unless you have a weakened immune system. Sam. For Sam, testing for many viruses is helpful in ruling out a bloodstream infection. If Sam didn't have this PICC line, I'm guessing we would have avoided this hospitalization.

They put his new PICC line in his left arm. We were grateful for this. His poor skin needed a break on his right arm. Sam has always had very sensitive skin. This doesn't pair well when adhesive is needed on your skin for a long period of time. We are hopeful we have figured out his dressing change potion so that we can avoid any skin breakdown this time around. Prayers for no skin breakdown and no new allergic reactions.

I am very thankful for this PICC line and I will be happy to be done with it! His surgeon did his dilation before they placed the new PICC line. He talked again about the surgery he would do if Sam does not tolerate his feedings. Continued prayers Sam will tolerate the max amount of his nutrition through his feeding tube so we can be done with this PICC and avoid another surgery!

Sam Strong.

Feeling better.

Faith Over Fear.

Christine Pheneger 2/15/23 Christine Pheneger 2/15/23

You Can Do Hard Things

Thankfully, Sam rocked Covid. He only had a low grade fever for a day or two. Pretty sure I got it too, but besides a nasty cough and stuffiness, I felt fine.

A lot has happened the last few weeks, but I’ll spare you all the details. Sam’s PICC line has been quite naughty, which has lead to a lot more work on our part.

And now, we are in the hospital again. Ugh.

A few days ago (Super Bowl Sunday), he developed a fever. Not again. We got through the night, but his night nurse said he had a rough night. His infusion nurse nurse apologized before she told us she had to advise us to take him in. Like I said before, we have to be extra cautious with a PICC line because of the risk of a blood infection. I’m so done with this PICC line.

His infusion nurse already drew the necessary blood work while we were still at home. We packed Sam up along with his blood and headed to the ED. After a very long wait, and all the necessary tests, he tested positive for another virus (Adenovirus). Seriously. I thought we might get sent home, but with his labs being a bit off, they wanted to keep him for for a negative blood culture. Then we lost the PICC line in the ED, which meant Sam would have to be poked. &$!#%. Oops, forgive my language.

It’s been a couple of rough days for him. He has been having seizures that seem to correlate when his fever spikes. Seizures aren’t new for him and aren’t a concern, but I just feel so bad for him. He has had happy moments in between being miserable. He was very proud of the cookie he frosted for me. Thank you to Child Life for this fun activity.

He’s on the surgery schedule to get a new PICC line and a dilation for tomorrow. He was scheduled to have a dilation next week so now we won’t have to come back for that. Thank you to his team for making this happen. Vascular Access (PICC line people) need to have a forty-eight hour negative blood culture before they will clear him to get a new line placed. We are all confident it’s the virus that’s causing the fevers and not sepsis.

There are a lot of missed details in this post. The last few weeks have been tougher than our norm. I appreciate the doctors that walk through this journey with us on an emotional level. Sam has a lot of doctors on his team, and many that aren’t on his team, but who know him well. The doctor on call a few weekends ago, encouraged me more than I’m guessing she’ll ever know. Our conversation ended with, “You’ve got this. You can do hard things.” One of the many things that keeps you going as a medical mama.

Prayers for today. There will be no positive blood culture. Sam will kick this virus quickly. There will be no more seizures. We can continue to manage his fevers. He will be ‘healthy’ enough for surgery tomorrow.

Sam Strong

Faith Over Fear

Christine Pheneger 2/1/23 Christine Pheneger 2/1/23

Feeds Update

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.

Sam Strong

Faith Over Fear

Christine Pheneger 1/12/23 Christine Pheneger 1/12/23

Starting Feeds

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

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

PICC Update

Sam has three cases managers. True story. He has one through our insurance, the state, and our home care nursing company. His insurance case manager gave me a couple of tips on how to prime (get ready) his TPN (nutrition). I’m sure it’s a combination of what I’ve been taught the past month and her tips, but I can can tell you I am having more success with no air in the line (tubing). I am comfortable with all things PICC line, but have a healthy fear of the sterile process.

What is a PICC line? Everyone knows what a PICC line is, right?! Now that we’ve been home for a bit, and have people asking more questions, I realize not everyone knows. News flash. I didn’t know what a PICC line was six years ago either.

Essentially, a PICC line is a small tube placed in a view on an upper arm close to the heart. This is a way for Sam to be able to get his minimum nutrition requirements without tube feeding. TPN is basically nutrition through your blood stream. One hundred percent of Sam’s nutrition is usually given through his feeding tube in his stomach. Because that was not going well for as long as it was, and we learned his little tummy was so irritated, a PICC line with TPN was the last resort.

We had his surgery consult. I wasn’t surprised by anything I heard. I’ve lived in this medical world long enough. The plan will be to try tube feedings after Christmas. If he’s not tolerating his feeds, they will do ANOTHER surgery in February or March. How many surgeries can one little boy’s body go through?!?!

Sam’s surgeon assured me the surgery would not be as invasive as many of his other surgeries. When I asked how long the hospital stay would be, he replied, “Usually three to five days.” He followed that with a slight chuckle. We both know Sam follows his own rules. I backed that up with, “We are going to shoot for three days, okay, maybe five.” And then I told him, “It’s not going to matter. Sam won’t need the surgery because he’s going to tolerate his feeds.”

All I want for Christmas is to be home with my family. The PICC line is going well. I suggested we don’t rock the boat and try feeds after Christmas. Sam’s surgeon agreed this was a ‘very reasonable’ plan. Spending another holiday, especially another Christmas, in the hospital is not on my bucket list. Although, Christmas is only a day. As long as we’re all together, the day we celebrate doesn’t matter so much, but being in the hospital on Christmas in no fun for anyone.

Sam is doing great. PICC line dressing changes are back to once a week and his little arm is no longer a mess. He definitely knows the infusion nurse’s voice when she walks in the door on Monday mornings. We all laughed when he gave her the side eye as she walked up the stairs this week. You can’t blame him for giving a side eye when he’s well aware I will have to sit on him and his home care nurse will have to hold his PICC line arm still while the infusion nurse changes his dressing for about fifteen to twenty minutes. He does a great job overall. His infusion nurse is always so impressed with how well he does. He’s a trooper and incredibly forgiving.

Sam’s not in school still, but being bored does seem to be a part of his personality. He loves to “organize”. Him and I have very different views on how to organize.

I was pretty proud of him when he set up the little table situation all on his own with some stools pushed together and the the blanket over them.

Silly Sam. The wrap around his head is suppose to be around his arm to protect his PICC line, but he likes it better as a hat.

This is a hat, not the dressing to protect my arm.

Sam’s biopsy results came back all good! As I suspected, no news was good news.

Praying you don’t hear from me until after the holidays and when you do it will be because Sam’s tube feedings are going well!

Wishing you and your family a Merry Christmas and Happy New Year!

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 11/24/22 Christine Pheneger 11/24/22

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